Sidebar

Magazine menu

27
Wed, May

Summary

Passionate about their missions, many nonprofit organizations attempt to make changes with the goal of enhancing their social impact. Additionally, organizations in the social sector are often compelled to make changes in response to demands from their customers, funders, regulators, and other stakeholders for more effective, affordable, accessible, and consumer-friendly services. However, despite the best of intentions and efforts, sustainable change is challenging for organizations in general. The literature consistently cites a 60-70 percent failure rate for organizational change initiatives starting in the 1970’s through the present (Ashkenas, 2013). For this reason, examples of successful organizational transformation that occur within the complexity of the social sector are particularly noteworthy.

Woods Services, Inc. (Woods) is a dynamic and thriving nonprofit population health, human services, and advocacy organization, headquartered in Langhorne, Pennsylvania, that addresses the social determinants of health and the special needs of more than 22,000 individuals with intellectual and developmental disabilities and complex medical and behavioral health conditions. Woods’ continuum of care includes innovative, comprehensive, and integrated medical, behavioral health, education, housing, workforce, and social services and support. Building upon Woods’ more than 100 years of experience and expertise, a new leadership team that was formed in 2016 developed an ambitious strategic directions and transformation plan to implement long-overdue organizational, programmatic, and infrastructure changes that were needed to better meet the needs of the individuals served, to respond to mounting stakeholder expectations, and to succeed in today’s business, regulatory, funding, and sociopolitical environments. As a result of these efforts, Woods has become one of the largest premiere intellectual disabilities organizations in the country. 

Woods is in the process of writing a book that shares the story about how it was able to accomplish in less than two years what it took other organizations decades to build, if they had built it at all. The book is intended for business leaders who are seeking valuable insights and practical strategies and tools about how to successfully drive organizational change. This article focuses on one critical aspect of the change process, organizational culture change.

Woods’ Vision for Change

Recognizing the need for transformational change, Woods turned to the concepts, principles, and practices of population health management as a strategy for enhancing care, reducing health inequities and disparities, addressing social determinants of health, and improving individual and organizational outcomes for individuals with intellectual and developmental disabilities and complex medical and challenging behavioral health conditions. An integral component of Woods’ vision is the concept of a comprehensive and coordinated continuum of care for life, which is consistent with the population health paradigm that Woods adopted as its overarching business model. This concept is based on the fervent belief that addressing the whole person and their physical and behavioral health throughout their lifetime enhances the quality of services, saves lives, and reduces costs. Woods’ vision for sustainable change also includes strategically positioning the organization for the growing move among states and insurers toward managed care and value-based funding for services to individuals with intellectual and developmental disabilities. Toward this end, Woods made significant investments in its infrastructure, workforce, and programs. 

Recognizing the dynamics of changing market forces and the need for organizations to be nimble, Woods uses an agile planning process to help drive its transformational initiatives. Rather than developing long-term strategic goals, which have a tendency to become obsolete over the life of a plan, Woods develops three-year strategic directions that help steer the organization in the direction of its vision. For each strategic direction, one-year measurable tactical objectives are developed and updated annually. This planning process enables the organization to break-down large long-term goals into achievable short-term objectives, discontinue objectives that became obsolete and develop new ones based on current data and market intelligence – all while maintaining a steady and consistent course toward its vision. Woods’ 2017-2020 Strategic Directions Plan was developed around four organizational priorities:  1) Mission-driven Growth and Improved Services; 2) Employee Engagement; 3) Enterprise Shared Services; and 4) Strategic Position, Policy and Thought Leadership.

Culture Change Initiatives

Successful change requires more than a vision and well developed strategic and tactical plans. Transitioning an organization from a current state to a desired future state, regardless of the scale, magnitude, or duration of the project, requires that people at all levels of the organization understand, support, and adopt the changes. The human element of any change process is one of the most challenging to manage because human beings inherently do not like change. This truth is brilliantly captured in the axiom attributed to management consultant and author Peter Drucker, “Culture eats strategy for breakfast.” This familiar adage is often cited because it resonates with the experience of most business leaders. 

The Business Dictionary has this to say about organizational culture, “Organizational culture includes an organization’s expectations, experiences, philosophy, and values that hold it together, and is expressed in its self-image, inner workings, interactions with the outside world, and future expectations. It is based on shared attitudes, belief, customs, and written and unwritten rules that have been developed over time and are considered valid. Also called corporate culture, it is shown in the ways the organization conducts its business, treats its employees, customers, and the wider community and how committed employees are toward collective objectives. It affects the organization’s productivity and performance, and provides guidelines on customer care and service, product quality and safety, attendance and punctuality, and concern for the environment. Organizational culture is unique for every organization and one of the hardest things to change.”

The Woods leadership team concurs with the premise that an organization’s capacity to achieve its goals correlates with its ability to shape its culture in support of them. Toward this end, Woods created an Employee Culture and Community Committee (EC3) and a chief culture officer role to drive cultural initiatives designed to attract, engage, and retain a high-performing and collaborative workforce supportive of Woods’ mission and strategies. The following abbreviated case studies provide examples of the ways in which Woods set out to create an intentional organizational culture to fit with its strategies. The culture shaping initiatives described in these case studies demonstrate the concerted efforts Woods made to align its corporate culture with its strategic and transformational goals in the areas of employee engagement and development; innovation; quality standards and behavioral guidelines; and equity, diversity, and inclusion.

Employee Engagement and Development

Woods and its affiliate organizations employ approximately 6,000 people and like most health and human service organizations in the country, are experiencing an industry-wide workforce crisis characterized by employee recruitment and retention challenges. Staff fatigue, burnout, and dissatisfaction, the by-products of not enough staff and excessive overtime, perpetuate employee retention problems, not to mention their impact on the quality of care. Additionally, as Woods organized its system of care around the principles and practices of population health management, it soon recognized that it has far more influence over addressing the conditions in the places where people live, learn, work and play for the people it serves, than it does for the people it employs. Subsequently, Woods began making concerted efforts through its employee engagement and development initiatives to address some of the social determinants of health that affect a wide range of health risks and outcomes of its employees. 

The Woods Employee Culture and Community Committee (EC3) is charged with helping to create and sustain an organizational culture that promotes the personal well-being and professional growth of Woods employees. The Committee works in partnership with the organization’s executive leadership team and together they have made significant progress toward these goals through several initiatives, including enhanced employee benefits; career pathways; and highly discounted, on-site college cohort programs, tuition subsidy, and student loan payment programs. 

Enhanced Employee Benefits

Employee benefits are meaningful ways of communicating to employees that they are valued and that the organization cares about their personal well-being and professional development. Woods is committed to continuous reviews of its employee benefits to ensure that they address employee needs and deliver the highest possible impact. As part of its culture shaping initiatives, Woods added or enhanced the following employee benefits.

  • A new retirement plan.  After nearly a year of studying the issues and considering options, Woods replaced a defined benefit pension plan for which only about half its workforce was eligible with a defined contribution retirement plan in which all employees are eligible to participate. Some of the savings resulting from freezing the defined benefit pension plan were used to fund the new retirement benefits, including employer contributions and employer matches. In addition to these financial benefits, the new retirement plan offers other advantages over the old one as it is portable, allows employees to direct deferments and investment choices, and enables employees to save on a tax-deferred basis. The introduction of the new retirement benefit was tremendously successful as evidenced by the fact that 93 percent of all employees enrolled in the plan shortly after its rollout with an average salary deferral of nearly four percent.
  • A new reference-based employee health insurance plan. Many employees are at risk for a range of preventable and treatable chronic illnesses, but often do not have easy access to health care because of work schedules, transportation issues, and financial concerns. Additionally, many employers are mitigating escalating health care expenses by shifting costs to their employees in the form of higher premiums, deductibles, and co-pays. For these reasons, Woods made it a priority to improve the health of its employees by containing health care costs and enhancing access to health care. One of the ways in which Woods accomplished this was through a partnership with Homestead, an innovator in the health insurance business sector that is helping to disrupt the market through reference-based pricing. Unlike traditional insurance networks, which negotiate fees with health care providers that are upward of 350 percent of Medicare reimbursement rates, reference-based pricing typically pays 120 to 170 percent above Medicare-negotiated prices. The prices negotiated by Medicare are used as a reference point because they are typically much lower than the prices negotiated by traditional health insurance networks due to Medicare’s purchasing power and its access to actual cost data. In addition to saving employers and employees between 20 to 30 percent in health care expenses, reference-based pricing enables employers to customize their employee health insurance plans. Woods worked with Homestead to design a plan with no employee premiums, minimal co-pays, no network restrictions, no required referrals, freedom from balance billing, and a very low-cost prescription plan. Because of stagnant funding, intellectual and developmental disabilities service organizations must work with partners to find creative ways to save money. As a result of its partnership with Homestead, Woods saved over one million dollars in employee health care costs in the first year it offered its employees a reference-based health insurance plan. Woods used the savings it realized through the referenced-based health insurance program to fund many of its employee engagement and development strategies, including increased compensation for targeted positions, discounted college cohort programs, tuition reimbursement and student loan payments, and on-site health care to all employees at no cost, through the Medical Center at Woods.
  • An on-site medical center available to employees free of charge. Woods launched a state-of-the-art onsite medical center that became a core component of its transformation as a population health management organization for individuals with intellectual and developmental disabilities and significant behavioral challenges and complex medical conditions. Woods leveraged its Medical Center to remove barriers to health care for its employees, who are able to use the Medical Center for urgent as well as for primary health care needs free of charge. The Medical Center is not only accessible to Woods employees in regard to location and cost, but also in regard to hours of operation, which take into account employee work schedules. Woods is confident that by removing barriers to health care for its employees it will have a positive impact on the overall well-being and health of its employees. The response to this benefit has been overwhelmingly positive as evidenced by nearly 200 employee medical appointments, more than 1,000 initial and annual employee health screenings, and 275 workers compensation appointments the Medical Center conducts per quarter. 
  • Financial literacy education and counseling services. Recognizing that financial health is a factor to overall personal well-being, Woods partnered with Clarifi, a not-for-profit financial counseling organization, to provide Woods employees with free on-site financial literacy workshops and individual financial counseling sessions. Employees were surveyed to identify topics of interest and overwhelmingly expressed interest in the topics of credit and debt, homeownership, and retirement planning. These workshops and counseling sessions, which were made available at the worksite free of charge, were particularly appreciated by staff because they demonstrated that Woods not only values them as employees but also cares about them as individuals. 
  • Discounted auto programs. As a perk to its employees, Woods negotiates discounted pricing for its employees with various vendors, such as Verizon Wireless. Recognizing that many of its employees struggle with transportation issues, Woods partners with regional car dealerships to extend their Family and Friends Discount Program to Woods employees. Many employees take advantage of this benefit and report high levels of satisfaction with their car buying experiences.

Career Pathways

Much in the same way that Woods applied its population health management approach as a service provider to its benefits programs as an employer, the Employee Culture and Community Committee (EC3) expanded Woods’ vision for the people it serves to include the people who support them. Responsible for helping to create and sustain an organizational culture that promotes the personal and professional growth of Woods employees, the Committee turned to the organization’s vision statement for inspiration and motivation, 

“We envision a world where an individual has opportunities and supports that promote self-determination, the joy of achievement and a fulfilling life.”

Heartened by this vision, the Committee embarked upon a planning and implementation processes to ensure that opportunities and supports for personal and professional growth exist at Woods for its employees. This was accomplished in part by the creation of career pathways and highly discounted on-site college cohort programs and other educational benefits.

One of the first initiatives that the Committee tackled was the development of career pathways to create progressive professional advancement opportunities at Woods. The Committee developed six career paths in the following areas:  1) adult habilitation and vocational services; 2) behavioral health; 3) care coordination; 4) education; 5) management; and 6) nursing. Each career path provides four to nine steps of advancement, which correlate with increased responsibility and compensation. For example, the nine progressive steps in the area of nursing are: 1) direct support professional; 2) medication trained staff; 3) certified nurse assistant; 4) licensed practical nurse; 5) registered nurse; 6) bachelor of science in nursing; 7) master of science in nursing; 8) certified registered nurse practitioner; and 9) doctorate of nursing. In developing the career pathways, the Committee decided to start each with the direct support professional so that all employees, including the largest constituency -- employees starting at entry level positions, may see themselves in these career trajectories. The Committee designed informative promotional materials to market the career paths both internally to active employees and externally to prospective employees. The brochures illustrate the opportunities for advancement in each of the six areas and specify the experience, education, and licensure required at each step. But just as importantly, these marketing materials were leveraged to communicate Woods’ investment in the personal and professional growth of its employees, its commitment to equity, diversity, and inclusion, as well as other employee benefits designed to promote personal and professional growth, including benefits in the area of education, health, and wellness, work/life balance, and retirement. These materials also provide examples of staff who have built careers at Woods by advancing through the career pathways as a way of inspiring hope. The career paths were rolled out with much fanfare as part of an internal employee career expo and are used on an ongoing basis as resources to mentor and develop employees, as well as to recruit new employees. The construct of the career paths and the benefits that Woods built to support employees on their personal and professional journeys are powerful and effective ways in which Woods is creating an intentional culture and distinguishing itself as an employer of choice. 

College Cohorts Programs and Other Educational Benefits

Woods partners with several regional colleges to provide highly discounted, on-site college degree cohort programs to support the growth and development of its employees. This is not solely an act of altruism because in addition to supporting staff, these programs benefit Woods in several meaningful ways. These programs are offered partly as a way of appealing to prospective employees and encouraging active employees to continue working at Woods. But more importantly, these programs are considered culture-shaping initiatives that are designed specifically to fit with and buttress Woods’ transformational goals and to develop high performing employees as well as the next generation of leaders at Woods. These strategically constructed educational experiences are designed to provide employees with knowledge and experiences that align with Woods’ vision, values, and goals and to build teams of current and future leaders who are equipped to help drive and execute Woods’ mission and strategies. Woods believes that the return on its investment in these programs and individuals will be manifested in the form of a well-prepared and loyal workforce that is invested in building a future together.

In much the same way that the career paths target direct support professionals, Woods’ initial partnerships with institutions of higher learning also focused on this largest constituency of staff, many of whom do not have college degrees. A partnership was established with Harcum College to provide Woods employees with an associate degree program in human services. Woods and Harcum College designed this program, which reinforces the principles and practices of evidence-based human services, specifically for working adults in regard to location, class schedules and formats, and cost. Classes are offered on the Woods campus in the evenings and during the weekends. Supervisors work with staff to adjust work schedules when conflicts occur, and employees are eligible for paid release time to attend classes. Harcum College discounts its tuition fees and in return Woods guarantees a minimum number of students per cohort. As a result of the discount provided by the school and tuition subsidies provided by Woods, as well as scholarships for which students receive help in applying, employee out-of-pocket expenses rarely exceed more than $1,000 per semester. The Harcum College associate degree cohort program at Woods continues to gain momentum in regard to its popularity among staff as evidenced by the growing number of cohorts since its inception in September 2017.

A year after launching the associate’s degree in human services program at Woods through its partnership with Harcum College, Woods partnered with the Philadelphia College of Osteopathic Medicine Department of Organizational Development and Leadership to develop a master’s degree cohort program in Nonprofit Leadership and Population Health Management for its current and emerging leaders. Like the Harcum College cohort program, this program is designed for working professions in regard to location, class schedules and formats, and cost. Classes are offered on the Woods campus in the evenings and on weekends and employees are eligible for paid release time to attend classes. The school offers Woods employees a discount and Woods subsidizes 50 percent of the remaining tuition costs. In return, employees make a commitment to work at Woods for at least two years post-graduation. This master’s cohort program offers a textbook example of how an organization can align its culture and strategies. Not only did Woods contribute toward the development of the program curricula in regard to population health management and non-profit leadership, but some of its senior leaders teach classes as adjunct faculty and guest lecturers. Through this unique collaboration with the College, Woods is able to influence the content of the courses and impact the experiences of the students, who are current and future leaders of the organization, in ways that are conducive not only to its transformational vision and strategies, but also to the organizational culture it is intentionally creating.

Building upon the success of these programs, Woods continues to partner with colleges and universities to offer its employees significantly discounted and highly accessible bachelor’s and master’s degree programs. In addition to the two college cohort programs discussed, Woods currently offers its employee eight other discounted bachelor’s and master’s programs, which align with Woods’ strategic and transformational plans, through partnerships with other colleges and universities. Additionally, Woods offers its employees a tuition reimbursement program, as well as a student loan repayment program. The impact of these educational benefits on employee retention is compelling. Woods experiences a 90 percent retention rate among employees participating in one of its discounted college programs and a retention rate of 81.5 percent among employees receiving any one of its educational benefits, including tuition reimbursement and student loan payments. These indicators compared very favorably to an overall employee retention rate of 73 percent.

When Woods launched the college, cohort programs it took note of the various challenges and barriers many employees faced in navigating the college application process and accessing financial assistance. It was hard to watch employees who made the courageous decision to pursue advanced degrees get stuck in a web of bureaucracy. For this reason, Woods created an employee benefits specialist position that is dedicated to providing employees with career counseling using the career pathways discussed earlier, assisting employees through the college application process, and helping employees apply for financial assistance through various grant programs. This resource is extremely valued by employees. In the first year, the benefits specialist helped many employees through the college application and admissions process and to access nearly $300,000 in tuition grants and subsidies.

In addition to these college programs and the stellar in-service training that is developed and provided by a dedicated training department, Woods launched other professional development initiatives that align with its transformational vision and strategies, particularly in regard to staff roles and responsibilities in relation to new program and service delivery models. For example, because of the fundamental role that care coordinators play in a population health management environment, Woods contracted with Rutgers University to provide all of its care coordinators with case management training and certification. Likewise, nurses play an imperative role in population health management. In a concerted effort to support the professional development of nurses, Woods developed a nursing mentoring program through a grant it received from the Foundation of National Student Nurses, in which nurse mentors are matched with medication trained staff and nurses to promote the number of bachelor-prepared nurses. Since the inception of this program, more than half the number of mentees are enrolled in Bachelor of Science Nursing programs. 

Innovation

As a means of developing dedicated employees and great teams and fostering a culture of innovation, Woods joined forces with Social Innovations Partners to provide its staff with social innovation lab experiences. These labs are designed to strengthen innovative thinking and entrepreneurial skills by taking participants through a process of idea exploration, testing, business model development, and execution. Woods opens the lab experience to staff across the Woods enterprise, including affiliate organizations, as a way of breaking down organizational silos and giving employees opportunities to work with colleagues from across the organizational structure and hierarchy. The labs are not only a great way to engage employees and support their development and creativity, but also serve as a way of identifying potential talent that might not otherwise get recognized. 

The social innovations labs stimulate creativity and cultivate entrepreneurial skills and capacity by taking participants through the following five stages of developing innovative products and services: 1) idea formation and exploration; 2) design thinking and rapid prototyping; 3) financial modeling and raising start-up capital; 4) scaling and scaling impact and system and policy influence; and 5) execution strategy. A series of six social innovations labs are offered over a 12-week timeframe and culminate in a pitch event, in which lab participants present their innovations and business plans to an enthusiastic audience of their peers and a panel of judges comprised of members of the Woods Services Board of Trustees, Woods Services Foundation Board, and executive leadership team. Proposals are judged based upon the following criteria: 1) Likelihood that the venture is going to create social impact; 2) Likelihood that the team is able to execute the venture; 3) Likelihood that the venture is financially sustainable; and 4) Quality of the pitch presentation. The top proposals receive seed funding from the Woods Services Foundation and ongoing technical support from management. Each year the Woods Foundation supports this highly effective culture shaping program and reinforces innovative and entrepreneurial ideas by pledging $100,000 to fund the most promising innovations that emerge from the social innovation labs. Winning proposals receive ongoing technical support from members of the executive leadership team. Many innovations birth through the social innovation labs have been successfully launched, including several social enterprises that provide employment opportunities for individuals with intellectual and developmental disabilities and innovative employee engagement and development initiatives, including an emotional intelligence leadership and mindfulness training program and an employee sanctuary room that addresses the devastating impact of secondary trauma that is often experienced by social service professionals.

Quality Standards and Behavioral Guidelines

In addition to cultivating the creativity of its employees by promoting an organizational culture that encourages and rewards innovation, Woods looks to other organizations and experts for ideas and inspiration. A prime example of this is the investment Woods made in sending staff to the Disney Institute to learn about Disney’s approach to leadership excellence, employee engagement, and quality services. Through the Institute, Disney’s renowned parks and resorts serve as living laboratories that enable professionals from industries and sectors from around the world to experience lessons taught by Disney leaders with first-hand observations in the field. These lessons and experiences were instructive and motivational and resulted in Woods adopting many of Disney’s time-tested business principles and insights. Based on a self-assessment of its strengths and weaknesses, Woods developed an overarching organizational culture shaping initiative based on the tenets of the Disney Institute’s Chain of Excellence paradigm, branded internally as the 3 Keys to Unlocking Potential. 

The program, which was developed with input from more than 100 individual Woods employee interviews and dozens of employee focus groups, was designed to create an intentional organizational culture by aligning Woods’ mission, vision, and core values with a clear and consistent framework and common language in regard to quality service standards and behavioral guidelines for everyone who works at Woods. The 3 keys (Safety, Comfort and Engagement) were rolled out in the context of a new brand promise, Support with Heart, and new logo in the shape of a heart, all of which exemplify Woods’ purpose and core values. The Safety Key has three service statements associated with it, each with corresponding defined behaviors, so that services are consistently delivered safely. The Safety Key encourages employees to always put safety first, to ensure the safety of self and others, and to protect the emotional safety of others. The Comfort Key encourages employees to do their jobs with heart and to make relationships matter. The term “comfort” is used to align The 3 Keys to Unlocking Potential initiative with a trauma-informed crisis management program Woods adopted to intentionally shift away from a culture of control toward a culture of comfort. The Comfort Key has two service statements associated with it, each with corresponding defined behaviors, so that services are consistently delivered with comfort.  The Comfort Key encourages employees to always support with heart and make relationships matter. The Engagement Key encourages employees to perform their jobs with courage, integrity, and ownership, to proactively engage with everyone, to work as a team and build partnerships, and to communicate effectively. The Engagement Key has four service statements associated with it, each with corresponding defined behaviors, so that services are consistently engaging.  

The 3 Keys to Unlocking Potential initiative is a driving and unifying force for culture change at Woods. Training of the three keys occurs through facilitated workgroups that meet over the course of several weeks and challenge staff to think about how to operationalize the keys and how they can personally help to influence the culture in their work areas. The keys are constantly reinforced through other forums, including new employee orientation, ongoing employee education and training, staff meetings, individual supervision meetings and employee performance feedback, employee recognition, as well as through various communication forms. Additionally, the Woods Employee Culture and Community Committee (EC3) works to ensure that the tenets of the 3 Keys to Unlocking Potential initiative is infused into the fabric of everyday life at Woods. 

Equity, Diversity, and Inclusion

Woods is very fortunate to have an active and dedicated Board of Trustees comprised of individuals with diverse backgrounds, experiences, and expertise. One Trustee, Ron Davis, serves as the Chief Diversity and Inclusion Officer at Parx Casino and encouraged and supported Woods to adopt best practices in the area of equity, diversity, and inclusion (EDI). Organizations with intentional cultures that embrace EDI principles and practices are effective and impactful and consistently outperform organizations that do not. The social sector should be a place where diverse populations can gain meaningful employment, feel valued, and have opportunities for advancement to leadership roles. The principles of EDI are directly aligned with the mission, vision, and values of Woods and its belief that people thrive when they are welcomed, respected, and included. As a corporate citizen that is committed to fair and inclusive social systems and workplaces and as part of its culture shaping initiatives, Woods responded to a competitive request for proposals and was selected by the Alliance for Strong Families and Communities (the Alliance) to participate in a national cohort program designed to build organizational capacity for EDI. The Alliance is a strategic action network of thousands of committed social sector leaders who through their influence are working to achieve a healthy and equitable society. They aggregate the very best sector knowledge and serve as an incubator for learning and innovation to generate new solutions to the toughest problems. They accelerate change through dynamic leadership development and collective actions to ensure policies and systems provide equal access and opportunity for all people in our nation to reach their fullest potential through improvements in health and well-being, educational success, economic opportunity, and safety and security. The Alliance network envisions a healthy and equitable society that is just, fair, and inclusive, enabling all people to participate and reach their full potential. Building on this vision, the Alliance, backed by grant funding from American Express Foundation, launched the Building Organizational Capacity for Equity, Diversity, and Inclusion cohort to advance specific, significant change for leaders, organizations, and the human services sector. Fifteen organizations, including Woods, and 30 leaders, comprised of a senior and emerging leader of color from each organization, were selected for the EDI cohort. The 15-month cohort experience included lessons, case studies, virtual study tours of best practice and promising organizations, leadership development opportunities, and the sharing and dissemination of success stories and lessons learned. Participating organizations deepen their capacity to attract, develop, and retain diverse talent and advance the knowledge base in the sector and beyond. 

As a cohort participant, Woods learned about the principles and practices of EDI and is working to achieve a healthy and equitable workplace that promotes access, opportunity, and prosperity for all of its employees. The creation of a Woods EDI Planning Committee, comprised of diverse representatives from all levels of the organization including the board, emerged from an initial EDI plan that drove the creation of a vision statement, a common understanding of key terminology, an organizational assessment, and development of EDI strategic goals and objectives. Woods’ EDI plan not only addresses building diverse and representative talent pipelines, but also fosters an organizational culture that supports the long-term sustainability of equity, diversity, and inclusion. In the area of human resources, the Committee set the goal of establishing a diverse workforce at all levels of the organization by ensuring equity and inclusion in recruitment, hiring, and professional advancement policies and practices. The Committee identified four strategies toward this goal: 1) Analyzing employee demographic data to identify trends in employee applicants, new hires, promotions, and disciplinary action; 2) Diversifying employee recruitment approaches to under-represented groups; 3) Promoting EDI via interviewing and hiring practices; and 4) Promoting the Woods Career Paths through an EDI perspective. In the area of policies, the committee set the goal of incorporating EDI objectives into the organization’s policies by: 1) Developing an EDI policy; 2) Conducting a comprehensive review of organizational policies from an EDI perspective; and 3) Engaging the Employee Council to identify effective and meaningful employee feedback mechanisms. In the area of education and training, the Committee set the goal of providing employees with opportunities to develop knowledge and skills to work effectively within a diverse environment. The Committee identified four strategies toward this goal: 1) Incorporating EDI content and curricula in as many employee training classes as possible; 2) Identifying and providing training courses that would help level the playing field for all employees, (e.g., technology for older adults and ESL); 3) Diversifying marketing of education cohort programs to under-represented groups; and 4) Providing the Board with information about EDI initiatives at Woods. In the area of organizational culture, the Committee set the goal of demonstrating a strong commitment to EDI by promoting a welcoming and inclusive work environment and by incorporating EDI principles and perspectives in the training and rollout of the 3 Keys embedded in the Unlocking Potential culture-shaping initiative. 

Several of the Committee’s strategies tie in with other change initiatives, such as the educational cohorts, career paths, and the 3 Keys to Unlocking Potential initiative. The more change initiatives are aligned with one another, the more successful and sustainable they become. After the EDI Strategic Plan was approved by the Executive Leadership Team and Board, the EDI Planning Committee formed subcommittees around each of the four focus areas. The subcommittees are comprised of Committee members and other interested staff and are responsible for implementing the strategies. The subcommittees are a way of expanding the Committee’s circle of influence and driving the EDI action plan. The EDI Committee monitors progress, successes, and challenges.

Concluding Remarks

In addition to the ways an organization conducts business and treats its employees, corporate culture is also manifested in the quality of its services. The concerted efforts Woods made to align its corporate culture with its strategic and transformational goals in the areas of employee engagement and development; innovation; quality standards and behavioral guidelines; and equity, diversity, and inclusion have had direct and indirect bearings on the services that Woods offers, the ways in which it provides services, and its service outcomes and impact. 

Woods has experienced remarkable success in implementing significant programmatic changes, which it attributes to its organizational culture initiatives resulting in an engaged workforce that is receptive and supportive of innovation and change. For example, Woods successfully adopted the Ukeru Method, a proactive, trauma-informed, restraint-free crisis management system that was developed by the Grafton Integrated Health Network and is recognized as a best practice in restraint reduction by the Substance Abuse and Mental Health Services Administration (SAMHSA). Since its implementation of the Ukeru Method, Woods has achieved a 53.3 percent reduction in the use of restraints. Additionally, Woods adopted the nationally recognized evidence-based School-Wide Positive Behavior Support Program. Since its implementation of this program, 60 percent of Woods students had one or fewer significant behavioral incidents. These and other transformational programmatic changes, which have had significantly positive effects on the individuals served by Woods, would not have been nearly as successful without the impact of Woods’ organizational culture change initiatives.

Organizational Culture

Lessons Learned

  • The collective values, assumptions, attitudes, and beliefs of an organization influence the way people think, feel, behave and interact in that environment.
  • Successful organizations create intentional cultures that are aligned with their purpose, values and strategies. 
  • An organization’s capacity to achieve its goals correlates with its ability to shape its culture in support of them. An organization’s culture can make or break change efforts.
  • Organizational culture is unique for every organization and one of the hardest things to change.
  • In regard to employee engagement and development, organizations may consider enhanced employee benefits and opportunities for professional development and advancement as part of their culture-shaping initiatives. 
  • The innovation lab experience is an effective and creative way of engaging employees and promoting a culture of entrepreneurship and innovative thinking.
  • A clear and consistent framework and common language in regard to quality standards make expectations clear to all employees.
  • Organizations that embrace the principles and practices of equity, diversity and inclusion create fair, diverse, and welcoming cultures that benefit everyone. 
  • The more change initiatives are aligned with each other the more sustainable they become.

Author Bio

Peter Shubiak currently serves as the Regional Director for Rehabilitation and Recovery Division for the Sheppard Pratt Health System. He previously served as the Chief Operating Officer and Chief Culture Officer for Woods Services.

 

In Pennsylvania, approximately 56,000 individuals with intellectual disabilities receive services through the state’s Office of Developmental Programs (ODP), which contracts with community providers to deliver services and supports under rigid quality and safety guidelines. Some of these guidelines are dated and were established at a time when data was not readily available. But even the smallest adjustments to these requirements are challenging to implement because changes take time and collaboration across many government departments and diverse stakeholders. 

For example, the staffing grid is a common tool used by state intellectual disability departments to determine staffing levels and is based on the notion that more staff minimizes accidents and makes individuals safer. Yet, a document created by ODP addressing fatalities in the system, the Fatal Four, does not identify the lack of staff as a primary reason for fatalities. Why then are Individual Service Plans (ISPs) based on the number of staff caring for individuals? Not only does this often prohibit individuals from living an “everyday life,” but it also costs the system additional money while creating an illusion of safety. Collectively the industry had decided that staffing ratios were a good measure of safety. At first glance, they seem to be. However, upon closer examination it becomes evident that the staffing grid provides a false sense of security for providers, individuals, caretakers, and funders, and often prevents individuals from experiencing an “everyday life,” does not provide additional safety, and even makes individuals less safe at times.

When ODP changed the waiver amendments in accordance with federal requirements in 2017, it changed the way residential providers are reimbursed, basing reimbursement rates on Supports Intensity Scale (SIS) scores rather than on staffing ratios. This change provided an opportunity for The Alliance of Community Services Providers to advocate for process improvements in regards to the staffing grid. Through collaboration and consensus building with providers and state and local government, changes that focus on actual safety and promoting an “Everyday Life” philosophy were achieved. 

Specifically, advocates recommended eliminating the staffing grid and for flexibility around the number of staff required at any given time. They reasoned that this would optimize funding as well as make it easier for individuals and providers to use technology to augment and supplement staffing and foster independence and a sense of accomplishment among service recipients. In an effort to change the staffing grid in Pennsylvania, a steering committee consisting of ODP, the Philadelphia Office of Intellectual Disabilities Services (IDS), service providers, and supports coordinators was convened. This committee quickly identified two key recommendations:

  1. Eliminate the residential staffing grid as the approved waiver amendments do not mention staffing grids or ratios, nor does Everyday Lives, a PA statewide document used as a guide by ODP as it develops policy and designs programs; and 
  2. In lieu of mandated staff ratios, determine the level of support a person needs based on activities specified in the ISP and describe the roles of staff during these activities. 

By way of an example of the second recommendation, "Mary" must have a person at arm's length distance while eating to assure that she does not aspirate. This makes it clear what is expected of the staff (a staff person must be arm's length distance from "Mary") and it clearly states the activity (eating) rather than time frames, e.g., Monday through Friday 8 a.m. to 4 p.m. The steering committee agreed that there could be exceptions to this and that, in some cases, a staffing ratio may be necessary to support specific billing codes. For example, "Mary" would require enhanced support, which may require justifying the credential of the staff rather than the number of staff. 

The steering committee advocated that a shift from staff focus to activity focus would improve safety and flexibility for the individual, the staff, and providers, ultimately leading to better and more integrated lives in the community. The committee acknowledged that these changes would have ripple effects on other parts of the system (e.g., changes to monitoring tools; licensing; quality assurance/quality improvement processes; and risk and incident management) and recommended that ODP pilot these changes among 30 individuals, four providers, and two supports coordination organizations (SCOs). A pilot was conducted and included the following elements:

  1. Identification of individuals 
    Each provider identified 10-12 individuals, and preference was given to individuals with pending ISP updates. The selection was based on diverse needs but with a focus on complex individuals.
  2. SCOs
    SCOs chose the seven to eight best-suited individuals per provider and kept it to a limited number of support coordinators to limit the training needed. However, the support coordinator normally assigned to the individual attended the ISP team meeting so existing relationships would not be disrupted. 
  3. Administrative Entity (AE) Support
    Philadelphia County identified a specific group of reviewers dedicated to this pilot to maintain continuity throughout the pilot.
  4. Service teams
    Trained service teams met to update the ISPs of selected participants, eliminating the residential staffing grid and specifying the level of staff support that was needed for each participant and activity/service -- as taught and now guided by the Support Coordinator of the service team.
  5. Debrief
    In a debriefing meeting with the steering committee everyone involved in this process provided feedback.  
  6. Recommendations 
    The Alliance of Community Service Providers presented the findings/recommendations of the pilot to ODP.

This pilot was expanded to two more rural counties to test it in less populated settings. These pilots were equally as successful, and after developing a training strategy that included webinars, face-to-face, and train-the-trainer sessions, the new staffing requirements were implemented in January 2020.

This initiative raised many philosophical questions. What are the challenges and why? How are service providers, SCOs, and the individual impacted? What does “Everyday Life” mean? How is safety measured? How much should safety impact the individual's access to an “Everyday Life”? When is safety an issue? Is constantly having staff around more prohibiting than supportive? What should be discussed in ISP meetings, and how should the meetings be conducted?

In the beginning, committee members were on very different sides of the spectrum regardless of who they represented. Towards the end, members gravitated towards the middle, and the committee was able to determine what it wanted to change and how. It is important to note that without the time consuming but very necessary philosophical discussions that occurred during the first six months, the Committee would never have been able to move forward. Furthermore, it would not have been able to successfully implement the pilots and ultimately this small but significant system change. 

Author Bio

Karin Annerhed-Harris joined the Alliance of Community Service Providers in 2013 as the Associate Director, responsible for collaborating with policymakers on a city, state, and national level. Karin educates policymakers on the importance of providing strong and sufficient human service programs for individuals with intellectual disabilities, mental health and/or substance use disorders, and children services. A strong supporter of innovation and with a focus on continuously improving social systems through research and collaboration with diverse industries and government, she serves on the advisory board of the Social Innovations Journal. 

The Alliance of Community Service Providers is a professional membership organization representing more than 65 nonprofit and for-profit organizations in Southeastern Pennsylvania that provide supports and services for adults and children with intellectual disabilities, those with mental health issues, and people recovering from addictions. Together, the members of the Alliance serve more than 200,000 people annually, employ tens of thousands of people, and generate hundreds of millions of dollars in economic activity.

 

Author Note

Special thanks to Dr. Jennifer Parker for her valuable feedback.

Correspondence concerning this article should be addressed to Anita Yuskauskas, Department of  Health Policy and Administration, Penn State Lehigh Valley, 2809 Saucon Valley Road, Center Valley, PA 18034  Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Abstract

This article identifies the dearth of research into the personal lives of the oldest old, the fastest growing age group in the United States. It calls for a better understanding of this unprecedented population change in order to equip aging individuals and society for the approaching population bubble. Social attitudes and the pervasive presence of disability in old age suggest parallels with Wolfensberger’s Social Role Valorization schema (2000). The research raises new questions about old concepts such as the disengagement theory and offers alternative ways to understand the oldest old. Finally, it offers a compelling framework within which to focus future research. 

Keywords: oldest old, social role valorization, social role theory, disability rights movement

The Rise and Role of the Oldest Old

We know little about the personal experiences of people who outlive the expected limits of human survival–otherwise known as the oldest old (Borglin, Edberg and Halberg, 2005; Sarvimaki and Stenbock Holt, 2000). The group is largely invisible in our society, according to John Leland, the journalist who wrote a quintessential series of articles in the New York Times on the group (Leland, 2019).  

This article examines America’s oldest old, those aged 85 and above, using a literature review and personal reflections from a prominent 92 year old, who was the first Commissioner of Aging in the State of Pennsylvania, former Editor in Chief of the Gerontologist, a public interest law attorney, a researcher, and an author. His reflections embody both the perspective of a professional and the experiences of a subject. His opinions generally support current literature, though in some instances he challenges prevailing thought or proposes new lines of research.  

Though somewhat unconventional, the article’s approach highlights an imperative for improved social understanding of the oldest old. It supports Conroy and Cohen’s (2019) call for qualitative research on the oldest old, to explore “what’s important, what really matters, attitudes and qualities of life” (p. 6). Their call for research has a clear purpose: to prepare the oldest old and the rest of us for the aging experience, to understand the range of options and tools at our disposal, and to thwart devaluation of yet another segment of society, similar to the massive institutionalization of persons with disabilities in the 1960s. Segregation and isolation of people with developmental disabilities in public institutions, for example, increased exponentially until 1969, at nearly 200,000 people, when it began to decline (Larson, Eschenbacher, Anderson, Taylor, Pettingell, Hewitt, Sowers & Bourne, 2018). Though short on answers, this article raises serious and important issues facing our society, and our lack of preparedness to support the oldest old as they move through unchartered territory.

Literature Review

How are we to understand social participation and valued roles for the oldest old? The ends toward which this group is focused may not be the same as those of their younger counterparts. As the fastest growing cohort of Americans enter the oldest old phase, our current ways of knowing and assimilating the group may be unfamiliar. We may be challenged to reevaluate how we think about the age group and the policies that benefit them. In fact, Riley and Riley (1989) suggest there is dissonance in our policies, between the potential contributions of older people and the ability of society to harness and make use of their skills. Known as structural lag, older people are subject to obsolete social roles nominally synchronized with the realities of their aging. This phenomenon occurs regularly, with every generation. Yet social stereotypes from one generation to another are slow to change, and laggard to grasp the dynamic and rapidly changing realities of aging. As a result, Riley & Riley (1989) assert that social roles and the aging phenomenon are not aligned and must be rediscovered with every generation. The dissonance between how society views the oldest old and how individuals in this cohort may actually perceive themselves is a subject of this study.

The number of Americans aged 85 and older is expanding rapidly. According to a Census Bureau report from 2018:

The number of people in the oldest old age group, which refers to those aged 85 and over, is projected to grow from 5.9 million in 2012 to 8.9 million in 2030. In 2050, this group is projected to reach 18 million. In 2050, those aged 85 and over are projected to account for 4.5 percent of the U.S. population, up from 2.5 percent in 2030 (Roberts, Ogunwole, Blakeslee & Rabe, 2018).

The oldest old group is the fastest growing segment of the United States’ population (Roberts et al., 2018), and this trend is emerging not just in the United States but around the world (Taylor, 2014). Yet we are ill prepared as individuals and as a society to understand and engineer this phase of our humanity. Passing into the oldest part of old age, and then successfully maneuvering through it, is a relatively new and unprecedented phenomenon (Taylor, 2014).

Aging Theory – Then and Now

Aging theory has changed and evolved over time, reflecting our emerging understanding of the aging experience (Lange & Grossman, 2006). To name a few, Cumming & Henry (1961) advanced the Disengagement Theory, which postulates that as people age, they gradually withdraw from society, and eventually disengage. Havighurst & Albrecht (1953), and later Havighurst (1961), put forth the Activity Theory, which counters the Disengagement Theory and proposes that, as they age and lose younger roles, older people develop alternative roles, though activity and relationships remain important. Neugarten and her colleagues similarly challenged disengagement, emphasizing that aging and activity lead to greater satisfaction in old age (Havighurst, R.J., Neugarten, B.L., & Tobin, S.S., 1963; Neugarten, Havighurst& Tobin, 1968). The Activity Theory became and remains a popular theoretical framework in aging. Today, “the principles of Activity Theory are evident in the work of most gerontologists” (Hillier, 2015, p. 89). But does this world view comport with the perspectives of the oldest old? According to the co-author:

It’s very hard…I think there is much more to Disengagement Theory than we think. The early thinking looked on it as a destiny, that we are destined to disengage because we lose friends, they die, they move away. We lose contact with the professional world, with our colleagues. So we produce a substitute – a senior center. I don’t think that cuts it.  I don’t know what the parallels are for the very old population who are limited in mobility to engage with others. It’s an elaboration of Disengagement Theory. People didn’t like Disengagement Theory because it wasn’t the logical thing to do. But we have to look at the phenomenon of disengagement” (E. Cohen, personal communication, April 6, 2019).

Though quickly usurped by the Activity Theory, and the subject to numerous critiques, “the ‘disengagement controversy’ dissipated long before the fundamental issues it raised were fully resolved” (Achenbaum & Bengtsom, 1994, p. 760). But perhaps the disengagement theory raised issues that warrant further consideration in aging theory today. For instance, Carsten, Isaacowitz & Charles (1999) raised the possibility that time and emotion play an important role in the perceived disengagement of older people. Drawing on the socioemotional selectivity theory, the authors assert that older people are generally better at regulating negative emotions, and function more maturely in their cognitive comprehension of emotions. So, when limited by time, older people engage in a natural “pruning process” of social contacts. As reported by the authors, this is not the result of disengagement, but is connected to a perception of limited time. As such, individuals tend to give prominence to “emotionally close social partners and disregard more peripheral ones as time in life grows increasingly limited (1999)”.  

This research provides an alternative to the disengagement theory. It offers insight into the changing perceptual realities of older people, which leads to a change in their social behavior. Thus, different conclusions may be drawn about the diminishing social lives of older people. As people age and we learn more about their experiences, we are challenged to better understand the correlation between theory and experience, and align current suppositions with the realities experienced by the oldest old.

Isolation and Loneliness

Research into loneliness offers additional insights into disengagement and the behaviors of older people. Cacioppo, Capitanio & Cacioppo (2014) discuss the distinction between isolation and loneliness - social isolation is physical separation, while loneliness is feelings of separateness. Loneliness is “a subjective, unpleasant experience that occurs when the desired level of meaningful social contact is less than what is available” (Allen, 2018). It causes a set of social and biological responses that trigger serious physical problems. In their Evolutionary Theory of Loneliness, Cacioppo & Cacioppo (2018) hypothesize that a strong behavioral and biological association exists between loneliness and premature death at all ages. While not all who are isolated are lonely, isolation is a critical risk factor for loneliness. At the same time, growing numbers of our oldest old citizens will likely experience isolation at some time in their lives. Understanding the biology of loneliness and its impact on our most vulnerable is critical, according to a study by the National Institute on Aging (2019), which is looking at early social interventions to address the physical correlates of loneliness, which may include inflammation, chronic diseases, and cancer.

The co-author explains: 

The energy required for social engagement diminishes [with age] but does not disappear entirely. Substitutes for the former stimuli are blocked by deaths of friends, colleagues, and associates, geographical relocation, losses of ‘membership’ in earlier groups, and absence of ‘job’ and job-substitute connections. Adult children move away or reduce contact. The remarkable connectivity provided in the digital era does not yet seem to remedy the void in social engagement that seems the norm for old age, even as we move further into the twenty-first century.  (E. Cohen, personal communication, October 25, 2017).

In fact, the digital era offers a mixed bag when it comes to social engagement. It has resulted in less human contact in some instances, as in the widespread use of ATMs, self-scan grocery check-outs, and on-line psychological therapy (Allen 2018). Yet digital technologies also enable unprecedented communication capabilities. By shrinking space and time, they promote family connections and even enable caregiving across the miles. At the same time, disparities have become more pronounced in the age of digital technologies due to a lack of access and technological literacy (Byrum, 2015). Given the exponential speed of change, no population is more impacted by technology than our oldest citizens (Vaportzis, Clausen, & Gow (2017).

Age Related Disabilities and Healthcare Policies

With the impending and rapid social expanse of the oldest old, “development of mortality, disease, and disability rates in elderly people will have a fundamental effect on sustainability of modern society” (Christensen et. al, 2009, p. 1120). In fact, Christensen and his colleagues add a fourth age to the major life phases, which include childhood, adulthood, old age and now, the oldest old life phase. The expanded framework elucidates population change and the impending need for social and economic policy accommodation in areas such as healthcare benefits, social programs, retirement age, and employment. As the oldest old expand in numbers, society is likely to experience unparalleled transformation.

I think there is something here to talk about---implications of a restructured society, changed patterns of dependency and support, new ways of assessing gender relevance in the labor force, retirement patterns, changes in childbearing patterns…  All of these simultaneous changes in population makeup, gender roles, and retirement are relevant to how we think about old age, old people; what they do and what they may require, and how and who pays for it. It is much in flux.  (E.Cohen, personal communication, July 27, 2018).

The net result of having an aging population is an increase in age related, disabling conditions. “The price we’re paying for extended life spans is a high rate of late-life disability” (Span, 2013). According to Harvard University’s Joint Center for Housing Studies, of households with residents aged 80 and over, 71 percent experience household activity limitations, 45 percent have mobility limitations, and 34 percent experience self-care limitations. The overall aging of the population “will increase both the share and number of older adults with disabilities, particularly in the 80 and over group (Harvard University, 2016, p.42). 

Population changes resulting from increases in both age and disability inevitably raise healthcare and economic policy considerations (Christensen et. al, 2009).  While not unique to the United States, they demand formidable public policy decisions. The World Health Organization (WHO) stresses that policies on growing aged populations must take into account changing societal norms such as technology, urbanization, separation of generations and gender norms (World Health Organization, 2018).

“Societal aspirations change from era to era, incorporating new substantive realities and new popular beliefs and social values of particular cultures - historical political movements, national and ethnic shifts, and scientific understanding.  The qualitative elements of old-old age are very different from understanding the elements of earlier life stages…What’s complicating is how [society] provides help and protection when physical, mental and social strengths and assets are declining. While preserving self-determination in the face of unremitting decline, a decline which extends longer and longer, we absorb and apply the benefits of medical care and treatment successfully and expand the size and nature of the population with disabilities” (E. Cohen, personal communication, July 27, 2018).

Maeckelberghe (2013) proposes one response to these expanding social changes and the ethical dilemmas that come with them - an ethical framework to help formulate public policy called “intergenerational solidarity”.  According to the Organization for Economic Cooperation and Development (OECD), intergenerational solidarity is when

Generations have a positive view of one another or there is consensus between generations on the way forward. It is also a means to an end: a mechanism for supporting mutually beneficial exchanges, both monetary and nonmonetary, between generations (OECD Ministerial Meeting on Social Policy, 2011).

Approaches to public policy that respect the views of multiple generations, as in intergenerational solidarity, benefit from the wisdom of the generations, assuming we can find consensus. One solution offered by the co-author, is to invest in social technology, defined as technological trends with philosophical implications that use “all available knowledge and the digital tools at hand to transform society.” Social technology provides a “cross-sector approach to identify and tackle the foremost challenges facing humanity (“The social and environmental impact of technology,” 2020):

“We need significant investment in social technology. That will not come from traditional post higher education. We need more social research, not on the technological ends of social research but more on imaginative outcomes of social research - sociology, social work, political science. We have not advanced our social response to the technological age. We have not seen how we think about aging in American society. All theoretical thinking in Gerontology is relatively recent – one or two generations” (E. Cohen, personal communication, April 6, 2019).

Public Attitudes and Old Age

Public attitudes have not always been sympathetic toward older people and those with disabilities. For example, many believe the Americans with Disabilities Act (ADA) has had little impact on improving acceptance of people with disabilities by the public at large, even after 25 years. “Horrific stories of racial prejudice, violence and abuse are still all too common in the news and can cause us to wonder how far we have come since the 1960s” (Bradford, 2015). In fact, “determining whether the ADA achieved its goals has proven difficult for scholars,” primarily because the ADA has not gone as far as intended in changing public attitudes (Moroto & Pettinicio, 2015).

The ADA covers all those with qualifying disabilities, regardless of age. So older adults with disabilities are equally eligible as their younger peers for accommodations under the law (Bachelder & Hilton, 1994). Similarly, misunderstandings aimed largely at younger, working aged people with disabilities are not dissimilar to those targeted toward older Americans. A recent framework analysis identifies public views of older people as generally negative, focusing on deterioration, stagnation, and dependency (Robbins, 2015). Further, older people are viewed as separate from society at large, while in competition for resources from other equally needy groups. The surveyed public believes older people have fewer family supports and are in some part responsible for their own wellness and financial stability; social determinants are not perceived to be relevant to their situation (Robbins, 2015). 

Because aging is associated with so many of these complex social issues, greater numbers of people will be the subject of life and death ethical decisions as the population ages. Society must grapple with uncomfortable questions, particularly when it comes to living with the oldest old. One example, in the words of the co-author, is: “What are the costs and benefits to individuals, families, communities, and society-at-large, of death at particular ages” (E. Cohen, personal communication, September 25, 2018)?  Ethical questions like this will be argued because they undergird our social policies.

As the oldest old become a larger segment of our society, discrimination and disparities are very real threats, with accompanying ethical challenges. 

“[These threats] are of particular relevance to social justice because they may arise from intentional or unintentional discrimination or marginalization and, in any case, are likely to reinforce social disadvantage and vulnerability” (Braveman, Kumanyika, Fielding, Laveist, Borrell, Manderscheid, & Troutman, 2011).

A social justice imperative for older Americans is upon us, and sorely in need of attention, lest we repeat mistakes of our past. The struggle for equality has touched many groups in the United States, including racial, gender, religious, disabilities, and LGBTQ. The struggles are founded upon oppression, particularly noticeable if you happen to belong to one of the excluded groups. Yet, the social systems and structures that exert the oppression have inherent discrimination. They exercise pressure to maintain the status quo (Loewen & Pollard, 2010). While some of the hard fought protections now exist as a result of these social justice movements, ageism continues to be the subject of discrimination. 

Social Role Valorization

Wolfensberger (2000) identified the societal tendency toward devaluation in his seminal work on “normalization,” later referred to as social role valorization. His schema has as its premise that “people’s welfare depends extensively on the social roles they occupy” (Wolfensberger, 2000). His work influenced the humane treatment of people with disabilities throughout the world. 

Wolfensberger became one of the most influential intellectuals and thinkers in the field of intellectual disability in the 20th century, thanks to his development of the normalization principle, his articulation of the theory of social role valorization, the creation of the tools … for assessing the quality of services, and the vast knowledge mobilization undertaken by his Institute for Training at Syracuse University for nearly 40 years (Flynn,n.d.). 

Disenfranchised groups are affected by devalued social roles, including people at extreme ends of the age spectrum and those who are impaired, or those with perceptibly negative body characteristics - the poor, those with few skills to offer or those who are unemployed and who are not participants in society (Wolfensberger, 2000, p. 107). Leulle (2018) points to the importance of maintaining (or even procuring) a valued social role, precisely because people who acquire cognitive disabilities tend to lose the [valued] roles they once held.

Investing in securing valued social roles …or even creating new valued roles for [those with cognitive disabilities such as Alzheimer’s] would greatly enhance their opportunity to exercise moral agency, even if they are increasingly dependent on the support of others for their identification and orientation in the social practice of upholding a moral identity (p. 272). 

Social discrimination resulting from disenfranchised roles has the potential to exacerbate inevitable and unpopular social policies emanating from a changing social order, including demands for more healthcare and strains on public benefits. 

The issues are complex [and emphasize] that a society which marginalizes disabled people will discriminate against them anew, as new structures and forums for discrimination evolve. One necessary approach is to combat the discrimination with laws, but fundamental change in society remains necessary.  Ruebin (n.d.)

Social disadvantage is difficult to regulate away, as we have seen with the ADA (Bradford, 2015). The outcomes of the ADA are even less clear when applied to the oldest old. In the words of the co-author:

Neither the world of old age nor the world of disability have looked systematically at the issue, largely I expect because the gerontology-oriented advocates were so caught up in the [assertion that] ‘old age is not a disability’ and the disability advocates were caught up in the fight for inclusion and participation of people with disabilities. And that fight was heavily influenced by the fight for participation in the labor force.  For the elderly, however, the issue was how to remain a participant while undergoing constant increased disability, with virtually no interest in extending participation in the work force, when advancing age was accompanied by diminished strength, endurance, and stamina…. One group pushing to get INTO the workforce, and the other seeking to get OUT of the workforce (Personal communication, Eli Cohen, August 22, 2018).

In the United States and Europe, recent social programs have begun to emerge that favor community integration and address the social need for improved understanding of older people with disabilities.  In the Netherlands, for example, students are offered free room and board in nursing homes in exchange for 30 hours per month of social contact with the residents (Reed, 2015). An example in the United States is Dementia Friendly America (DFA), representing a worldwide concept aimed at bolstering community tolerance, improving acceptance and embellishing community-based care options for individuals with dementia.

DFA is a national network of communities, organizations and individuals seeking to ensure that communities across the U.S. are equipped to support people living with dementia and their caregivers. Dementia friendly communities foster the ability of people living with dementia to remain in community and engage and thrive in day to day living. (Administration on Aging, n.d.)

But our society is still a long way from embracing and tolerating those with differences. Initiatives such as DFA advance acceptance and support for those who are aging with disabilities. We will be challenged to see inclusion in new ways as our population morphs in unprecedented ways. More efforts like these are necessary to counteract negative public misconceptions, and to address the widespread impact of our impending population changes. In our increasingly polarized society, finding social tolerance for those on the fringes is paramount.

Discussion

A population bubble like no other will emerge in the United States and the world over the next 30 years, and it will impact all of us in unforeseen ways. A central problem to emerge from this team's preliminary research is one of social roles. At each age in the lifespan, American citizens tend to have reasonably clear roles and expectations. People with significant disabilities, however, have historically been excluded from standard and valued roles – such as going to public schools, living in communities, and contributing to the workforce. As we have seen with recent research cited above (Robbins, 2015), the oldest old also experience devalued roles in our society. 

Gerontology has not thought in parallel tracks with the professional world of disabilities. One of the major issues that has come from the disability world is, [people with disabilities] said ‘we want to participate’. But we don’t raise that question in aging. What are the ways to participate? We think about the senior center. That is not a way to participate in the larger society. The world of disability said we want to participate in the larger world (Personal communication, Eli Cohen, April 6, 2019). 

Social policy focused on Wolfensberger’s Social Role Valorization (SRV) is therefore an area worthy of exploration. The SRV framework would target the creation of socially valued roles for older people, ones that award contribution and purpose. But before designing any such policy positions, it is essential to study, learn, and listen to our oldest citizens. 

Conclusions and Future Study

Aging populations have latent strengths and contributions that society does not employ and may not comprehend. Lacking appropriate roles, older people may find themselves in social role structures that eventually create a self -fulfilling prophecy.  “Bereft of social opportunities, resources, or incentives, older people cannot utilize or sustain their mental or physical strengths and capacities (Riley & Riley, 1989, p. 5). Compounding this social mismatch, measuring the phenomenon may demand different ways of understanding the experiences of older people. “Growing old may very well mean a shift in emphasis on domains of importance for the perception of quality of life,” according to Borglin, Edberg & Halberg (2005). We may lack the appropriate knowledge to know what questions to ask or concepts to query. Hence, qualitative studies are necessary to ferret out assumptions and hypotheses in our discernment of the oldest old cohort.

In addition to incongruent roles society establishes for older persons, the probability of experiencing one or more disabilities becomes very high for people over 85. While age is not a disability, with very advanced age the two traits do indeed become highly correlated. 

While the acquisition of disabilities is practically inevitable with age, negative social stereotypes continue to be the norm with both older people and with those having disabilities. Disability for the elderly may be different from younger and other population groups.  This thought may be worthy of substantial exploration, with different outcomes, expectations, and probabilities, differences in the nature of disabilities and likely long and short-term outcomes, impact on the individual and others (spouse, family), and different [government] entitlements (e.g. education, public assistance programs, transportation, medical assistance, and so on).  Given that ALL elderly have disabilities, and that virtually all elderly experience increasing disability, and they have perhaps decreased ability for rehabilitation, diminished caregiver resources, and diminished economic resources, what are the appropriate goals for addressing disability in late life?” (E. Cohen, personal communication, July 27, 2018).

If the oldest old experience social roles and disabilities differently than previous generations or their younger counterparts, what policy-related questions need to be answered? What approaches do we use to understand the apparent dynamic social roles of each generation’s aging phase? Can Social Role Valorization accurately frame the policy issues the world is facing in the advent of the oldest old population bubble? What role expectations are there for the oldest old?  How can we develop such roles?  To what extent can age-related disabilities be addressed with social technology, adapted physical environments and public attitudes? What do these accommodations look like and to what end are they employed?  

The rise and role of the oldest old must be better understood. The questions raised represent only a fragment of compelling issues and ethical considerations to inform near-future social and health policies in the United States. For the aged reaching the oldest old milestone and for society managing its impact, current social policies and programs are unsuitable. Our collective challenge is to understand the aging experience from those living it, so we can better provide support to them, their families, and society (Cohen, 2016). This is not optional, and we are considerably behind schedule. America and the world are ill prepared for the impending changes we face from a new social order. Likewise, Americans are ill prepared for living this long.

References

Achenbaum, W.A. & Bengtson, V.A. ; Re-engaging the Disengagement Theory of Aging: On the History and Assessment of Theory Development in Gerontology, The Gerontologist, Volume 34, Issue 6, 1 December 1994, Pages 756–763, doi-org.ezaccess.libraries.psu.edu/10.1093/geront/34.6.756

Allen, C. (2018). How the digitalization of everything is making us more lonely. Retrieved from theconversation.com/

Amundson, R. & Tresky, S. (2007) On a Bioethical Challenge to Disability Rights, Journal of Medicine and Philosophy,32:6, 541-561, DOI:GZ 10.1080/03605310701680924

Administration on Aging – Dementia Friendly America.  Retrieved from: www.dfamerica.org/communities-overview/

Bachelder, JM & Hilton, CL (1994) Implications of the Americans with Disabilities Act of 1990 for elderly persons. American Journal of Occupational Therapy. 48(1), 73-81.

Borglin, G. & Edberg, A. & Hallberg, I. (2005). The experience of quality of life among older people. Journal of Aging Studies. 19. 201-220. 10.1016/j.jaging.2004.04.001. Available at: www.researchgate.net/publication/

Bradford, M. (July 24, 2015). Reflections on the Americans with Disabilities Act 25 years later. Charlotte Lozier Institute, lozierinstitute.org/

Braveman, P. A., Kumanyika, S., Fielding, J., Laveist, T., Borrell, L. N., Manderscheid, R., & Troutman, A. (2011). Health disparities and health equity: the issue is justice. American Journal of Public Health, 101 Suppl 1(Suppl 1), S149-55.

Borglin, G. & Edberg, A. & Hallberg, I. (2005). The experience of quality of life among older people. Journal of Aging Studies. 19. 201-220. 10.1016/j.jaging.2004.04.001. Available at:www.researchgate.net/publication/

Bradford, M. (July 24, 2015). Reflections on the Americans with Disabilities Act 25 years later. Charlotte Lozier Institute, lozierinstitute.org/

Braveman, P. A., Kumanyika, S., Fielding, J., Laveist, T., Borrell, L. N., Manderscheid, R., & Troutman, A. (2011). Health disparities and health equity: the issue is justice. American Journal of Public Health, 101 Suppl 1(Suppl 1), S149-55.

Byrum, G (2015) How has technology changed America’s families? Retrieved from www.weforum.org/agenda/2015/05/

Cacioppo JT & Cacioppo S. Loneliness in the modern age: an evolutionary theory of loneliness (ETL). Advances in Experimental Social Psychology 2018; 58:127-197.

Cacioppo, S, Capitano, JP & Cacioppo, JT (2014). Toward a neurology of loneliness. Psychological Bulletin, 140(6), 1464-504. doi: 10.1037/a0037618

Carstensen, L. L., Isaacowitz, D. M., & Charles, S. T. (1999). Taking time seriously: A theory of socioemotional selectivity. American Psychologist, 54(3), 165-181. doi: dx.doi.org.ezaccess.libraries.psu.edu/10.1037/

Christensen, K., Doblhammer, G., Rau, R., &Vaupel, J. W. (2009). Aging populations: the challenges ahead. Lancet (London, England), 374(9696), 1196-208.

Cohen, E. (2016). The Last 2000 Days - Thou shouldst not have been old till thou hadst been wise. Shakespeare (King Lear). Gerontologist, Vol.57, No. 1, 116-120. academic.oup.com/gerontologist/article/57/1/116/2631985

Cohen, E. (2019, April 26). Personal Communication.

Cohen, E. (2018, September 25). Personal Communication.

Cohen, E. (2018, August 22). Personal Communication.

Cohen, E. (2018, July 27). Personal Communication.

Cohen, E. (2017, October 25). Personal Communication.

Conroy, J & Cohen, E  (2019). Attention to the Oldest Old: A Research Agenda. Unpublished manuscript.

Cumming, E., & Henry, W. E. (1961). Growing old. New York: Basic Books.

Dovey, C. (October 1, 2015) What Old Age Is Really Like. The New Yorker.

Dunn, L.B., Alici, Y. & Roberts, L.W. (2015). Ethical challenges in the treatment of cognitive impairment in aging. Current Behavioral Neuroscience Reports, 2 (4): p. 226-233. doi.org/10.1007/s40473-015-0055-0

ELM Maeckelberghe, The aging population: ethical challenges for contemporary society: Els Maeckelberghe, European Journal of Public Health, Volume 23, Issue suppl_1, 1 October 2013, ckt126.214, https://doi.org/10.1093/eurpub/ckt126.214

Flynn, R.J. (n.d.). Contributions of Wolf Wofensberger to the Lives of People with Disabilities.  Chapter 3. Retrieved from www.wolfwolfensberger.com/images/WolfWolfensberger.pdf

Harvard University (2016). 2016 Annual Report of the Joint Center for Housing Studies. Chapter 3, pages 36-49. Retrieved from www.jchs.harvard.edu/sites/default/files/.pdf.s

Havighurst, R.J.; Successful Aging, The Gerontologist, Volume 1, Issue 1, 1 March 1961, Pages 8–13, doi.org/10.1093/geront/1.1.8

Havighurst R.J., & Albrecht R.: Older people; New York, 1953, Longmans, Green.

Havighurt, R.J., Neugarten, B.L., & Tobin, S.S. (1963). Disengagement, personality and life satisfaction in the later years. In P. Hansen (ed.), Age with a future (pp. 419-425). Copenhagen, Denmark: Munksgoasrd. 

Hillier, S.M. & Barrow, G.M. (2015). Aging, the Individual, and Society, 10th Edition.

Lange, J. & Grossman, F. (2006). Theories of aging. In Mauk, K.L. (Ed.), Gerontological nursing: competencies for care (pp. 41-65). Burlington, MA: Jones & Bartlett.

Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., &Bourne, M.L. (2018). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2016. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

Leland, J. (2019, January 4). The Best of ’85 and Up’: Life Lessons From the Oldest Old. New York Times. Retrieved from: www.nytimes.com/2019/01/04/nyregion/

Laceulle, H. (2018). Conclusion. In Aging and Self-Realization: Cultural Narratives about Later Life (pp. 251-276. Bielefeld: Transcript Verlag. Retrieved from www.jstor.org/stable/j.ctv8d5tp1.12

Lindland, E., Fond, M., Haydon, A., & Kendall-Taylor, N. (2015). Gauging aging: Mapping the gaps between expert and public understandings of aging in America. Washington, DC: .

Loewen,G. & Pollard,W. (2010). The social justice perspective. Journal of Postsecondary Education and Disability, 23(1), 5-18.

Maroto, M. & Pettinicchio, D. (2015). Twenty-five years after the ADA: Situating disability in America’s system of stratification. Disability Studies Quarterly. Vol. 35 (3). dsq-sds.org/article/view/4927/4024

Martin, P., Poon, L. W. Living into the fourth age: is it a wonderful life? Aging Today; Jan/Feb 2014; 35, 1; ProQuest 

Mayerson, Arlene (1992). The history of the Americans with Disabilities Act: A Movement Perspective.  dredf.org/about-us/publications/

Neugarten, B. L. (1969). Continuities and discontinuities of psychological issues into adult life. Human Development, 12, 121-130.

Neugarten, B. L., Havighurst, R., & Tobin, S. S. (1968). Personality and patterns of aging. In B. L. Neugarten (Ed.), Middle age and aging; a Reader in Social Psychology. Chicago: University of Chicago Press.

OECD Ministerial Meeting on Social Policy (2011, May 2-3). Session 3: Paying for the past, providing for the future: Intergenerational solidarity. Retrieved from: www.oecd.org/social/ministerial/.

Ortman, j.M., Velkoff, V.A., & Hogan, H.(May, 2014) An Aging Nation: The Older Population in the United States Population Estimates and Projections

Reed, C. (2015, April 5). Dutch nursing home offers rent-free housing to students. Retrieved from www.pbs.org/newshour/world/

Riley, M. W., & Riley, J. W. (1989). The Lives of Older People and Changing Social Roles. The Annals of the American Academy of Political and Social Science, 503(1), 14–28. doi.org/10.1177/0002716289503001002

Robbins, L.A. Gauging Aging: How Does the American Public Truly Perceive Older Age-and Older People? Generations - Journal Of The American Society On Aging. 2015 v. 39 no. 3 pp. 17–21

Roberts, A., Ogunwole, L, Blakeslee, L.& Rabe, M. (October, 2018). The Population 65 years and older in the United States. Report No. ACS-38. Washington, D.C.: United States Census Bureau, 

Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37, 433–440.

Ruebain, D. (n.d.) What is prejudice as it relates to disability anti-discrimination law? Disability Rights, Education and Defense Fund. Retrieved from: dredf.org/news/publications/

Sarvimaki, A., & Stenbock-Hult, B. (2000). Quality of life in old age described as a sense of well-being, meaning and value.  Journal of Advanced Nursing, 32(4), 1025–1033

Span, P. (2013, July 8). The new old age: Caring and coping. The New York Times. Retrieved from  newoldage.blogs.nytimes.com/2013/07/08/.

Taylor, P. (2014). The next America: boomers, millennials, and the looming generational showdown. New York, New York: Public Affairs.

The social and environmental impact of technology. (2020). Retrieved from www.iberdrola.com/social-commitment/.

Vaportzis, E., Clausen, M. G., & Gow, A. J. (2017). Older Adults Perceptions of Technology and Barriers to Interacting with Tablet Computers: A Focus Group Study. Frontiers in psychology, 8, 1687. doi.org/10.3389/fpsyg.2017.01687

Wolfensberger, W. (2000) A Brief Overview of Social Role Valorization. Mental Retardation: April 2000, Vol. 38. 

World Health Organization (WHO) (2006, August 16). Active ageing: A policy framework. Available at: http://www.who.int

World Health Organization (WHO) (2018, February 5). Ageing and health. Retrieved from: www.who.int/news-room/fact-sheets/detail/

Summary

Our Wave is a recently formed 501(c)(3) non-profit organization and online storytelling platform that allow survivors of sexual violence to anonymously share their experiences and find community online. This article shares the experiences of the founders forming the organization to address gaps in survivor support. This article also shares survivor-centered features of the platform and future directions and implications of this organization. 

Sexual violence is an epidemic impacting individuals of all genders and cultures across the globe. It is estimated that one in three women and nearly one in four men have experienced sexual violence involving physical contact at some point in their lives, bringing lasting feelings of shame, self-blame, confusion, and isolation (Smith, Zhang, Basile, Merrick, Wang, Kresnow, and Chen 2018). While many think of sexual violence as a singular event or events, the impact of sexual violence lasts well beyond the assault experience or escaping one’s perpetrator. Despite this, few survivors actually disclose or seek help after these experiences for a number of reasons including their emotional state (e.g., shame, embarrassment, guilt, and self-blame), fear of external exposure (e.g., poor treatment by the justice system, not being believed, lack of confidentiality, assailant retaliation, public exposure), and environmental factors (e.g., organizational barriers, rape myths) (Munro 2014, 19).

Disclosure is an important step of the trauma healing process, viewed by researchers as a gateway to processing and seeking help following sexually violent experiences (Ullman 1999, 343-58). With the rise of the #MeToo movement, more and more people are beginning to come to terms with their own history of sexual violence and are beginning to feel empowered to share their stories to promote awareness and help others. However, many fear publicly joining the conversation due to similar concerns listed above. This leaves many stories untold, especially those originating in marginalized populations. The lack of an anonymous outlet was a gap noticed by the founders of Our Wave, whose informal online survey taken by 265 sexual violence survivors revealed that while only 47 participants had shared their written survivor story with others, 181 would like to share their story anonymously online. This gap was also noticed by Dr. Laura Sinko though her research, when a sexual violence survivor said to her:

“Recently, especially with more women talking about what has happened with them, I have had times where I’m like, ‘Maybe I should post about it, or share, or say something,’ but then I have a feeling like ‘No, don’t do it’. I’m afraid of what people would say, like ‘Oh, you just had some bad sex, that’s not assault’…And then, I don’t know, just embarrassment, like having family members see. Like, I don’t know if I want to open that up to people, but I kind of have a feeling like, I don’t know, it might be helpful for me.”

Our Wave was created to fill this gap by fostering a space where survivors can anonymously and safely share their stories of struggle and healing after sexual violence. Survivors who are interested in sharing their story do so through the platform’s website, with optional prompts to encourage them to additionally share what healing means to them along with a message of hope and healing to another survivor who may be struggling. The responses are then reviewed by team members who redact any identifying information, provide content warnings if applicable, and post them to the site five to seven days later. Survivors have complete control of their story, and can take it off the site temporarily or permanently at any time. Survivors also have the opportunity to read the stories of others and react to them, contributing to the website’s global impact score, eliminating the typical gratification of likes and comments given to individual posts on other social media sites. 

Other important features of the platform include: virtual grounding exercises for individuals to practice before reading or sharing stories, safety exits to enable viewers to vacate the site quickly in case of an emergency, story tags to enable readers to find communities they relate to, and resource lists made available at all stages of the story sharing and viewing process to connect individuals with local and national organizations should they decide they may need additional support. What makes Our Wave truly unique, however, is its vision to use its platform to aggregate stories to be used as data for research to illuminate healing and perpetration patterns. This enables story sharing participants to contribute to a larger narrative to help others like them, while informing the future creation of prevention and intervention initiatives. 

The most obvious way to track the impact of this site is through the website’s global score, listing the number of story views as well as the global reactions people have had to the variety of stories (e.g. how many users thanked a survivor for sharing their story, found hope through a story, felt inspired by a story, related to a story, or wanted a survivor to know they are not alone). Another measure of impact is the number of stories posted as well as the resulting manuscripts and interventions created from the data gathered by the organization. Our Wave has built an interdisciplinary team as well as a board of directors with expertise in advocacy, research, and survivor care to enable the group to rigorously analyze and translate the insights gained through shared survivor narratives. 

Currently, Our Wave is funded by the charitable donations of individuals, corporations, and philanthropic organizations. As a newly established non-profit, Our Wave is investing in a sustainability model that is comprised of grant funding, continued personal donations, larger philanthropic commitments, and direct finances through the licensing of the Our Wave platform for corporations and other national sexual violence prevention partners. Our Wave is actively seeking partnerships with organizations that can leverage the platform within their survivor communities. Additionally, Our Wave is looking to increase its impact through discussions with funding partners (corporations, philanthropies, and individuals) who deeply care about survivors.

By providing a voice to survivors and a direct bridge to accessible online resources, Our Wave hopes to encourage survivor engagement in the healing process. Our Wave will continue to reach survivors through social media engagement, university partnerships, accessing a national network of rape crisis centers, and establishing partnerships with advocate groups at a global scale. The group already has working relationships with the National Sexual Violence Resource Center (NSVRC), North Carolina Coalition Against Sexual Assault (NCCASA), Interact, local district attorney offices, survivor advocates, national rape crisis centers, and many others. Through these partnerships, the organizations have ensured their platform is trauma-informed and have indicated their continued commitment to partnering with Our Wave. Our Wave hopes to continue to scale and grow in the upcoming year to reach a wide network of survivor support centers across the country and to build awareness and interaction with their platform.

There are many long-term implications that may result from the creation of Our Wave. Mainly, the founders hope to aggregate survivor stories in an accessible place to promote awareness, community, empathy, education, and activism in this area. Additionally, this platform fills an important gap of promoting survivor autonomy through the anonymous telling of their story without the influence, comments, or interruption of others. This can do wonders for survivors’ overall wellbeing, and the impact that will be made in survivor’s individual lives may have great ripple effects on our larger world. Finally, the power of research is the power of storytelling. Our Wave has a highly qualified research team that has the skillset to evaluate these stories to inform the scientific community and larger public of distress patterns, potential prevention strategies, and healing themes. The analysis of their de-identified data will be shared at conferences, to partnering organizations, and through the publication of scientific manuscripts to ensure they are bringing survivor voices to the table of research, policy, organization, and clinical decision-making. By creating space for survivors to tell their stories and creating an opportunity for them to reflect on their progress and triumphs, the founders of Our Wave hope to not only better understand the impact of sexual violence and how to best intervene, but also to create a community of hope and healing after these experiences. 

Works Cited

Munro, Michelle L. "Barriers to care for sexual assault survivors of childbearing age: An integrative review." Women's healthcare (Doylestown, Pa.) 2, no. 4 (2014): 19.

Smith, Sharon G., Xinjian Zhang, Kathleen C. Basile, Melissa T. Merrick, Jing Wang, Marcie-jo Kresnow, and Jieru Chen. "The national intimate partner and sexual violence survey: 2015 data brief–updated release." (2018).

Ullman, Sarah E. "Social support and recovery from sexual assault: A review." Aggression and violent behavior 4, no. 3 (1999): 343-358.

Author Bios

Laura Sinko is a PhD prepared mental health nurse, sexual assault nurse examiner, and first year postdoctoral fellow in the National Clinician Scholars Program at the University of Pennsylvania. Laura has expertise in narrative and photography research methods with the majority of her research focusing on understanding recovery after gender-based violence. Currently, Laura serves at the Director of Research and Evaluation at the nonprofit organization Our Wave, an online platform for survivors of sexual violence to anonymously tell their stories. Laura has a passion for creative research dissemination to educate survivors and service providers about the healing journey.

Kyle Linton is the co-creator and Executive Director of Our Wave. He founded Our Wave to provide a means for survivors to share their stories, find healing within a supportive community, and empower change across the globe. Kyle graduated from North Carolina State University (NCSU) in 2014 with an undergraduate degree in business administration. Kyle has a background founding and leading growth stage software startup companies. Leveraging his previous experience, he hopes to grow the Our Wave platform to impact survivors across the globe.

 

Key terms:  self-determination, outcomes, evaluation, choice, community membership, quality of life, person-centered planning, freedom

Abstract

Among change efforts in community services to increase the self-determination of persons with developmental disabilities, few, if any, have empirically shown system wide benefits in the categories of improved quality of life, increased community membership, and cost reduction.  We obtained outcome measures on 19 different dimensions of quality in the lives of persons who participated in a regional change effort at the Monadnock Development Services agency in southwestern New Hampshire.  The project changed the package of services offered to people by furnishing them with portable, individualized budgets and choices related to service type and service vendors.  Improvement was noted across most corollary indicators, and no negative outcomes were noted.  The Project showed that autonomy and self-determination could lead to enhanced satisfaction, community involvement, and resource savings. 

Outcomes of Self-Determination in New Hampshire

The intellectual disability field has experienced a long term pattern of systematic underfunding (Spreat, in press).   As a result, providers are unable to pay a living wage to Direct Support Professionals (Spreat, McHale, & Walker, 2017) and providers of intellectual disability services themselves are in serious financial jeopardy, with 1/3 of these  providers  losing money in each  year of a five  year study (Spreat, 2019).   

It must be recognized that not only are the providers of intellectual disability services underfunded, most state directors of intellectual disability services are not being allocated sufficient funds to provide needed services.   Hence, we have waiting lists and the Direct Support Professional workforce crisis.   Faced with this situation, many state intellectual disability directors have elected to impose some sort of price controls.   These price controls have typically taken the form of either exceptionally complex fee for service models or some variant of managed care.  Managed care, as practice in the intellectual disability field, might be more accurately called managed costs.   

Economists tell us that price controls tend to have negative consequences (Pettinger, 2017).   These negative consequences include 1) creation of shortages (waiting lists, Direct Support Professional shortages), 2) development of black markets (rich families establishing their own programs), 3) cost diversion (divert funds from Direct Support Professionals to support program, divert funds from other programs), 4) reduced investment in the field, and 5) the manipulation of services to match funding contingencies rather than consumer need.   Despite these warnings, our field has moved to adopt a variety of price control measures as a means with which to deal with chronic underfunding.   It remains a curiosity that the addition of another layer of bureaucracy is expected to save any money. 

The other alternative open to state intellectual disability directors is to support cheaper forms of service.  To date, these efforts have largely been done via life sharing (adult foster care) or paying families to care for their family member who has a disability.   While subjective impression of these efforts has largely been positive, neither model has been submitted to empirical validation as was the group home model (cf. Conroy & Bradley, 1985).   Further, neither approach has been demonstrated to be viable for individuals with significant medical and/or behavioral challenges.    

There is an alternative to the top heavy managed care models and the untested reduced price models.   In 1993, the Robert Wood Johnson Foundation awarded a three year grant to Monadnock Developmental Services of Keene, New Hampshire, to assist in answering this central question, “How would a system of supports look if people with disabilities and their circle of friends, or network, were truly in charge of their own services, if they achieved self-determination?” (Nerney, Crowley, & Kappel, 1995, p.5).  The New Hampshire Self-Determination Project was intended to implement and test this premise by increasing the power, authority, and resources of individuals to control their own destinies (Nerney, Crowley, & Kappel, 1995).  The Project was “an attempt to fundamentally reform both financing mechanisms and basic structural aspects of the current service delivery system” (Nerney & Shumway, 1996, p. 7).  In so doing, the Monadnock service organization addressed three fundamental issues: (a) It enabled individuals and their families to control dollars without dealing with cash; (b) It changed the role of case management to that of personal agents and independent brokers of services chosen by the focus person; and (c) it organized a coherent response to a managed care culture.

In order to bring what appeared to be a complex intervention into the realm of scientific verifiability, it was necessary to distill the self-determination concept into a testable hypothetical form.  This hypothesis had three propositions:

  1. If people gain control,
  2. Their lives will improve, and
  3. Costs will decrease.

In this hypothesis, gaining control included control of resources.  It also implied transfer of control from professionals toward the focus people and their freely chosen allies, usually unpaid, in other words, toward “circles of friends.”  Improvement of lives meant measurable enhancements in one or more qualities of life.  Decrease in costs referred to changes in the sum total of public dollars expended to support the person. 

Each of these three propositions will be discussed. 

If People Gain Control

The focus of this intervention was to provide a means with which consumers of service were enabled to gain a greater degree of control over their lives.   The above referenced phrase, “if people gain control,” means several things.  It means that service consumers and their freely chosen allies gain power over life choices.  The creators of the self-determination principles and practices believed that American service systems had moved much too far in the direction of professional domination of people’s lives (Nemey, Crowley, & Kappel, 1995).  Paid people were making all decisions, small and large, about every detail of the way people lived, worked, learned, and took part in leisure.  The pendulum had swung too far.

 Hence “people gaining control” means that professional domination of all life choices diminishes.  Self-determination is fundamentally about power, and who wields it.  It also means that the power held by professionals will transfer toward the person and the person’s freely chosen (usually unpaid) allies.  This implies increased participation by unpaid people in the individual planning process.

“Gaining control” must be seen above all to mean control over resources.  In the most radical statement of the importance of this facet, one of the founders of the movement has stated that “Person-centered planning without control of resources is cruel and unusual punishment.”  The claim is that encouraging people to dream, and to design a life that would be enriching and fulfilling, without the power to allocate existing funds as needed to approach that dream, is not a kindness.  Hence a central and irreplaceable component of self-determination is the development of individual budgets.

In order to gain control over resources, one must find out what public dollars are currently being spent from what coffers.  This is not an easy task in most states and localities.  Once such a figure is determined for a person, it then becomes possible to work on an individual budget.  By setting a “target” at the beginning, the planning group (variously called the team, the interdisciplinary team, the circle of friends, the circle, the support network, or a host of other terms) can aim to create the most engaging and fulfilling opportunities possible within the predetermined amount of money available.

Individual budgeting has proven to be among of the most difficult, and yet the most fundamental, of the preconditions for self-determination.  Perhaps the thorniest problem is how to set a budget amount for people who are just entering the service and support system.  What is “fair?”  How can that be quantified?  How much does one person and circle “deserve,” and why is that different from some other person and circle? Some states have adopted the AAIDD Supports Intensity Scale as a means with which to ascertain the amount of financial support that is needed.   

It is also important that "gaining control" was not interpreted to mean that the focus person had to be able to express all preferences and control all supports and budgets.  With the essential adjunct of person-centered planning and its variants, the ultimate authority could be placed in the hands of the "team" when the team members were unable to understand or clearly interpret the person's desires

Improvement of Lives

The second part of the theory says that when power shifts away from professional domination, and toward people and their trusted allies (often unpaid), their lives will improve.  But in what way?  At the outset of this research on self-determination, no one really knew which of a person’s dozens of qualities of life might be affected.  Certainly, it was a given that power would shift, and if control over one’s own life and making choices can be considered a “quality of life,” then this had to be the first item on the agenda for measurement.

In the situation of uncertainty about how the intervention will affect people’s lives, the only proper scientific approach is to measure a broad range of qualities of life.  For this reason, the Personal Life Quality protocol was administered for each participant.  The protocol is described in the Methods section below.  The basic idea is that, if self-determination has impacts, they might be felt in one or more of dozens of dimensions.

Costs will Decrease

The third part of the self-determination “theory” is that “costs will decrease.”  This hypothesis was originally based on the observation of three “case study participants” in the original work at Monadnock Developmental Services, Inc., in New Hampshire (Nerney, Crowley, & Conroy, 1993).  Project implementers noticed that reduction of professional domination in the planning process seemed to be associated with a new tendency for teams to purchase precisely what was needed and wanted, and no more.  This was believed to be in contrast with the traditional service system, in which all the built-in incentives forced service providers to make sure every dollar was spent at the end of the fiscal year, and that more was requested in each subsequent year.

The original Monadnock demonstration concentrated on people who were living and working in “traditional” situations, meaning in small group homes and supported living arrangements.  The grantee agency in New Hampshire did not have any ICFs/MR or large group homes (more than four people), nor was anyone in any public institution.  Workshops had decreased sharply as well.

The purpose of this study is to describe the outcomes experienced by the 38 participants in the self-determination project in the Monadnock Region of New Hampshire over an 18 month period.  A variety of aspects of their qualities of life were obtained and compared.  The results of that comparison constitute the body of this study. 

Methods

Design

The evaluative data reported herein originated from a simple pre-post design.  Information was collected from 42 of the 45 project participants at the beginning of the Project (three declined the entire research portion of the demonstration project at the beginning).  Then, after 18 months, information was again collected from 38 of the 42 individuals from Time 1 (Four participants had either left the region or had ceased participation in the initiative, one by “graduating” entirely from the human service system).  

Participants

The analyses presented herein concern 38 persons with developmental disabilities who received services through Monadnock Developmental Services, Inc., the local agency that administers services to persons with developmental disabilities in Region V of New Hampshire.  The participants became involved in the Self-Determination project at varying times after November 1993, and they were still involved in February 1996.  Data collection was completed at both Time 1 and Time 2, spanning an 18 month period between each data collection.  

At the beginning of the Project, there were approximately 175 persons with developmental disabilities who received major forms of support from Monadnock Developmental Services.  These people formed the pool of individuals from which the project selected participants. The project proposed to include 45 people over a three year period.  The agency requested “nominations” of people who were believed to be in difficult situations, or in situations in which their opportunities to make choices about their lives were overly restricted.  Nominations were solicited from people receiving services, case managers, families, and providers.  The first 45 nominations were accepted.

Although labels for level of intellectual disability were not widely used in New Hampshire, about 32% of the participants were considered to have “severe or profound” intellectual disability; 26% were reported to have “moderate” intellectual disability; 18% were classified as having “mild” intellectual disability, and 24% were not labeled or the classification was unknown.  Comparatively, a national sample from the late 1980s revealed that about 37% of people in small community living arrangements were classified as having severe or profound intellectual disability (Amado, Lakin, & Menke, 1990).  There were 18 males and 20 females in the project.  Mean age was 39 years.  Other than intellectual disability, the most common disabilities were vision (27%), seizures (14%), mental illness (11%), major health problems (11%), and communication (8%).  

At the beginning of the project, 25 of the participants (66%) lived in homes that were described as group homes or apartments with 24 hour supervision.  Seven participants (18%) lived in family living or substitute family situations.  One person lived in a relative’s home, and three persons lived in independent homes.  The living arrangements of the remaining two individuals were classified as “other.”

Peoples’ primary day activities at the beginning of the project were generally described as “non-vocational” in nature (26 persons, or 68%).  Very few (7 or 18%) participated in any kind of employment situation, including supported, competitive, or self-employed.   

The average participant had contact with three relatives and received a median of 12 visits per year.  The average participant was reported to have a mean of nine “close friends,” of whom a mean of five were paid personnel. 

Because generalization is a critical issue, it is important to compare the 38 participants to those individuals who did not participate in this Project.  The latter group was composed of persons who also received supports from New Hampshire Region V, but who did not participate in the Self-Determination Project.  No differences were detected between the groups with respect to age, number of years institutionalized, gender, additional disabilities, and challenging behavior.  The participants were lower in adaptive behavior (t=1.95, df=125, p=.027) and lower in vocational behavior (t=2.31, df=95.70, p=.012) than the individuals who did not participate in the Project.  Although the differences were small in magnitude, they did show that the participants were lower on these functional scales than the non-participants.  These findings suggested strong support for the generalizability of findings from the participants to the rest of the agency population.

Instrumentation  

This evaluation was designed in an attempt to determine whether project participants increased personal control, derived greater life satisfaction, and spent less money.  Different instruments and procedures were employed to address each of these three basic premises of the Self-Determination movement.  It should be noted that these instruments were part of a larger program evaluation package, the Personal Life Quality Protocol (Conroy, 1993), that was employed in the Monadnock project. 

Personal Control – Personal control was assessed via the Decision Control Inventory (Conroy, 1995). The Decision Control Inventory was designed to tap the multiple dimensions of self-determination.  The scale is based on past efforts to measure the opportunity of individuals to make choices.  The Decision Control Inventory includes 26 dimensions of everyday life, such as the use of personal money, choice of foods, choice of homes, choice of case managers, whether to have pets, and so on.  For each of the 26 dimensions, respondents were asked to describe decision making on an 11  point scale, with the value of 0 meaning that decisions are made entirely by paid staff and the value of 10 meaning that decisions are made entirely by the individual and/or unpaid loved ones. The 26 items were summed and converted to a 100 point metric.  A score of 0 indicates that all control is vested in the hands of paid personnel, while a score of 100 indicates that all control is vested in the individual or his/her allies. 

The Decision Control Inventory has been tested for reliability (Conroy, 1995).  Internal consistency, as measured by Cronbach’s alpha, was estimated to be .95.  Test-retest reliability was estimated to be .98, based on a Pearson correlation between two temporally noncontiguous administrations of the instrument.  The third test of the Decision Control Inventory combined test-retest with inter-rater reliability, and the correlation was .86.  It should be noted that the Decision Control Inventory is linked with adaptive (and probably cognitive) abilities.  The correlation between scores on the Decision Control Inventory and overall adaptive behavior was .71.

In addition to the Decision Control Inventory, we studied the composition of the teams supporting the service recipients.  Specifically, we determined the percentage of persons on the teams who were paid by the service provider or a related agency.  We also determined the percentage of persons who were invited by the service recipient (or his/her ally) to serve as team members.  

Quality of Life – We identified six measures that addressed the issue of life quality.  These measures were collected via a life satisfaction interview of the service recipients, the Individualized Practices Scale, the Physical Quality Inventory, identifying each individual’s circle of friends, determining the extent to which each individual participated in community activities, and assessing the productivity of each individual.  Each measure is discussed below.

Life Satisfaction Interview - Each visitor attempted to ask the person’s own opinion about his/her life.  This was done using an instrument called the Quality of Life Changes scale (Conroy, 2002).  This scale asked the person to rate the quality of his/her life A YEAR AGO and then rate quality NOW.  Ratings were presented on 1 to 5 point scales, with 1 being Very Bad and 5 being Very Good.  Ten specific ratings were collected (Health, Making own decisions, Choices, Family Relationships, Seeing Friends and Socializing, Getting Out and Around, Day Activities, Food, Happiness, and Comfort).  This was the only part of the personal interview in which surrogates (usually residential staff) were allowed to give their opinions if the individual was unable or had difficulty.  

Individualized Practices Scale - The Personal Life Quality Protocol contained a scale measuring individualization in day to day rules, regulations, and practices.  It was called the Individualized Practices Scale, and it assessed whether practices in the home were individualized versus group oriented, flexibly versus inflexibly applied, and whether practices could be tailored to individual needs and practices.  It was derived from the work of Pratt, Luszcz, & Brown (1981), which was based on the Resident Management Practices Inventory developed by McLain, Silverstein, Hubbel, and Brownlee (1975), which in turn, was an adaptation of the Child Management Scale from the pioneering work of King, Raynes, and Tizard (1971).  The latter was a measurement of resident- oriented versus staff-oriented practices, and was subsequently used in several cross cultural studies by Zigler and his colleagues at Yale (Balla, Butterfield, and Zigler, 1974).  

The Individualized Practices Scale is simply a series of 15 scaled questions about how day to day matters were managed in the home.  How bedtime was handled would be an example: Does everyone have to go to bed at the same time?  Answers were given on a four point scale.  Scores on the scale could thus range from 15 to 60, with higher scores indicating higher levels of individualization.  The scale was collected by interview with someone familiar with the residential practices in the home, and took about 5 minutes to complete.  Devlin (1989) reported inter-rater reliability of .78 and test-retest reliability of .86, both values satisfactory for group research (Anastasi, 1988).

Physical Quality Inventory - The Physical Quality Index was modified from Seltzer’s (1980) instrument, which was in turn a derivative of portions of the Multiphasic Environmental Rating Procedure (Moos, Lemke, & Mehren, 1979).  It is a measure of how home-like, comfortable, attractive, orderly, and pleasant the setting was.  The Physical Quality Index is completed after the visiting data collector walks through the residence, rating each room on dimensions such as cleanliness, odors, condition of the furniture, individualized room decorations, and overall pleasantness.  High scores on the Physical Quality Index, which yields scores that range from 0 to 100, suggest a more home-like environment.  Interrater reliability on this instrument has been reported as .81, with test-retest reliability at .70 (Devlin, 1989).  Again, both values were satisfactory for group research.  

Circle of Friends – Circle of friends was quantified in terms of the number of team participants and whether team participants were paid or unpaid.   For example, family and friends were likely to be unpaid, whereas any agency staff were paid.  

Community Integration - The scale used to assess integration was taken from the Harris poll of disabled and non-disabled Americans of 1986 (Taylor, Kagay, & Leichenko, 1986).  It simply measured how often people visit with friends, go shopping, go to a place of worship, go out for recreation, and so on, in the presence of persons without disabilities.  The scale admittedly taps only half of the true meaning of integration; if integration is composed of both presence and participation, then the Harris scale reflects only the first part.  Presence in the community is a necessary, but not sufficient condition for participation in the community.  

Productivity - The productivity scale was created by Conroy (1993).  The scale included 10 items such as: Getting Up in the Morning, Working with Others, Following Safety Rules and Regulations; Quality of Work, Promptness, and Attendance at Job or Day Program.  Higher scores are indicative of greater degrees of productivity.  Productivity was reflected by earnings and by the amount of time engaged in daytime activities that were designed to be productive (adult day activities, vocational training, workshops, supported, and competitive employment.  The productivity scale has not been formally tested for reliability, but the correlation between the scores at Time 1 and Time 2 was .78, suggesting a satisfactory degree of reliability.  It should be noted that reliability limits the extent to which two variables can correlated (see Cronbach, 1971 for discussion), such that unreliable measures would be unable to yield large correlations.

Cost Analysis – Expenditures for individuals were hard to determine, and in most cases, had to be estimates.  In a critical step in this Project, Monadnock Developmental Services began ascertaining the baseline costs by extricating individual costs from congregate costs.  This required extensive work and estimation, particularly on the part of the case managers and service providers.  The three primary kinds of expenditures were residential program costs, day program costs, and the costs of coordination (case management, administration, etc.).  Coordination costs were separated from actual service costs so as to differentiate the portable from the non-portable costs.  This process began in early 1996 and was completed for the 43 participants who were still active in September 1996.  

Considerable progress had been made by the end of the second year.  It should be noted that this cost analysis departed slightly from the analyses described above.  More than 38 persons were included because (a) of the availability of data, and (b) more recent data were available about costs. 

Before running statistical tests on cost changes between Time 1 and Time 2, it was necessary to convert to constant dollars.  Department of Labor statistics showed that the Consumer Price Index for all items increased 2.9% from 1994-95 to 1995-96, and 3.0% the following year.  All cost data were converted into 1994-95 constant dollars.  This had the effect of leveling the cost comparisons into 1994-95 buying power units. 

Data Collection Procedures

Each data collection visit required approximately 45 to 120 minutes per person.  The data collectors, or visitors, were independent contractors who were familiar with the field of disabilities, but who were not currently receiving a paycheck from any of the agencies involved in the region.  They received training on the data collection instruments from the principal investigator.

Results

The basic premise of the Monadnock Self-Determination Project was that if people gain control over their lives, their lives will improve and service costs will decline.  We will address each of these three areas.

Did people gain control? – The Decision Control Inventory was administered twice for each project participant.  This instrument indicates the extent to which an individual controls aspects of his/her life.  A score of zero indicates that all aspects of that individual’s life are controlled by paid personnel.  A score of 100 (the maximum score) indicates that all aspects of that individual’s life are controlled by the individual and/or his/her freely chosen unpaid allies.  At Time 1, the mean scores for the 38 participants was 67.42 (sd = 20.37).  At Time 2, the average score among these same 38 people was 71.53 (sd = 17.07).  This increase of 4.1 points out of 100 over an 18 month period of time achieved statistical significance via correlated t-test (t = 1.73, df = 37, p = .046, one tailed).  

In addition to the Decision Control Inventory, the composition of planning teams was evaluated.  We reasoned that an increase in the number of unpaid members of the planning team would reflect a shift in power from the service provider to the service recipient.  At Time 1, the mean percentage of unpaid team members was 22.1%.  At Time 2, this mean percentage increased to 34.2%. The increase was statistically significant (t = 3.95, df = 35, p < .001, eta squared = .294).  Participants in the Monadnock Self-Determination Project experienced increased team membership of unpaid friends and loved ones.   It was also noted that at Time 1, 39.7% of the average team had been chosen by the individual (and/ or the individual’s closest contact).  At Time 2, the average team was made up of 57.3% chosen members.  This increase was also statistically significant (t=2.06, df = 29, p = .048). 

Did Their Lives Improve? – Life quality was assessed via direct interview of service recipients, ratings on the Individualized Practices Scale, and an assessment of the quality of the physical environment in which the service recipients lived.  In addition, we considered the circle of friends for each individual, the frequency with which the individual participated in community outings, and productivity.

Ratings from the Personal Interview were collected for ten specific dimensions of quality, shown in Table 2.  Ratings from the ten dimensions were combined into an overall rating for A YEAR AGO and for NOW.  The average score for overall quality of life A YEAR AGO was 66.4 (sd = 24.5).  For NOW the average was 77.7 (sd = 10.0).  This difference was significant (t=2.96, 37 df, p=.003, eta squared = .205).  On the average, then, the participants reported (sometimes with assistance from others close to them) that their lives were considerably better NOW than A YEAR AGO.

For the Self-Determination Project participants, the average score on the Individualized Practices Scale (IPS) before Self-Determination began (Time-1) was 82.5 (sd = 10.2).  At Time-2, this had risen to 87.5 (sd = 11.5), an increase of 5 points on a scale of 100.  This increase was significant (t=2.31, 37 df, p=.015, eta squared = .175).   This is consistent with the finding that 34% of the participants moved from group homes to supervised or supported living situations, where more personalization is possible.  The participants’ home environments had become more individualized during the Self-Determination Project, according to the IPS measure.  It should be noted that the Time-1 scores were already relatively high.  The average score for recently deinstitutionalized people in California is 64.3, and the MDS Self-Determination participants began at 82.5.

The average Physical Quality Index (PQI) score for Project participants at baseline (Time-1) was 64.1 (sd = 8.4).  At Time-2 the average had increased to 71.0 (sd = 9.0), and this was significant (t=3.61, 37 df, p=.001, eta squared = .277).  The participants were living in more home-like, pleasant settings after 18 months of Self-Determination.

 There was no change in the proportion of people reported to have a group that could be called a “circle of friends.”  It was about 50% at both times.  However, for those who had a circle of friends, the average number of members in the circle increased sharply from 4.7 (sd = 2.6) to 10.5 (sd = 10.5)(medians 4.0 and 10.0), and this increase was significant (t=2.32, 37 df, p=.020, eta squared = .329).  The size of “circles of friends” (for those that had them) more than doubled.

The Self-Determination process was unrelated to any increase in peoples’ frequency of outings.  The average number of outings increased from 47.4 events per month (sd = 27.0)  to 52.6 (sd = 25.2), but the increase was not significant .  It is worth noting that the Integrative Activities figures at Time-1 were already very high;  they were about double the national average for people with developmental disabilities (Conroy, Feinstein, Lemanowicz, Devlin, & Metzler, 1990).

The average amount of time spent in day activities at Time-1 was 26.5 hours per week (sd = 8.7).  At Time-2, the average was 29.2 hours (sd = 9.7), for an increase of 2.7 hours per week.  The increase was significant (t=1.93, 37 df, p=.031, eta squared = .096).  During Self-Determination, the average participant increased the amount of time spent in productive educational or vocational daytime activities.  This again is consistent with the finding that participants involved in non-vocational day activities decreased from 68% to 34%, meaning that more people were involved in productive vocational activities after 18 months of the self-determination project.  In addition, average weekly earnings increased from $25.10 to $32.69, but this was not a significant increase.  We concluded that the outcome of productivity had increased in terms of time spent, but not in terms of income.

Did costs decrease? - Two cost analyses were conducted. The first analysis was a conservative one with 40 people, including even those for whom uncontrolled life events had altered their costs markedly.  The second analysis excluded persons who experienced those uncontrollable life events; hence, the sample size is smaller.  The results are presented in Table 4.  By either method, the cost reductions were statistically significant.  The Table shows the t-test value and the p significance value.  Both p values were .001, meaning such large changes would occur by chance less than 1 time in 1,000 experiments.  The more conservative method, with all 40 people, showed an average saving of $7,698 per person.  Calculating percentages, this meant that in 1996-97, costs were 87.6% of what they had been in 1994-95.  The second method, with only 22 people, showed an average saving of $10,594, meaning costs were reduced to 84.5% of the baseline costs. Taking the conservative method, the total projected savings across 40 people were $307,920.  The second method did not lend itself to this analysis.

Discussion

The core principle underlying self-determination is choice.  People must be afforded the opportunity to exercise choice to the greatest extent possible, rather than complying with the presumably better judgments of professionals (see Valdez, in press for discussion).  It is curious that if one has an IQ of 75 and receives governmental supports, one typically receives a check or some sort of food stamp card.  The recipient of these benefits is then, within broad limits, able to determine how the money should be spent.  If, however, one’s IQ is 65 and one has the label of intellectual disability, it is most likely that someone else will make these decisions for the individual.   In a sense, the label creates a dichotomy – able vs. not able, and ultimately, the most pervasive form of handicappism.

The self-determination model attempts to recognize the invalidity of a dichotomous model, stressing instead that the person receiving supports should, with the assistance of friends and family, be able to make decisions about needed supports and services.   Rather than a decision making dichotomy, the self-determination model recognizes a continuum in which an individual, with necessary assistance, exercises a maximal degree of choice.   As noted above, the model suggests that the person is not broken, but rather in need of some help.

The data presented within this report are dated; the most recent data collection was in 1996.  Yet they remain timely in the midst of societal discussions of how to support people with intellectual disability for less money.  The study suggests that satisfactory outcomes can be achieved at reduced costs by allowing individuals and their “circle of friends” to determine what supports are needed.  Unlike most funding models currently under discussion, the self-determination model stands alone in the ability to offer at least some sort of empirical evidence of its ability to save money.   Rather than trying to somehow tighten spending by adding yet another layer of bureaucracy, perhaps it is time to seriously evaluate alternative models such as self-determination.  This pilot study suggests that at least modest savings might be attained through the adoption of self-determination methodology.   While the evidence supporting the self-determination approach is not overwhelming, it stands far above any evidence supporting the use of managed care approaches.  A speaker at a recent planning event responded to a question about evidence supporting managed care by stating, “Yes, that is the question, and we don’t have an answer” (Spreat, personal communication).  Absent any empirical support for alternative approaches, it seems curious that the self-determination model seems to have fallen from the ranks of considered alternatives. Our data suggest the model should at least be considered a potential alternative. 

Part of the experimental nature of the Self-Determination Project has been to ask:  “How far can these principles be extended, to what kinds of people, with what outcomes?” At the outset, then, the expected outcomes of the Self-Determination Project were not operationalized in detail.  In other words, program implementers were not entirely sure how the Project would impact measurable qualities of life of the participants.  Thus, in this situation we measured as many outcome dimensions as possible.  It should be recognized, however, that increased freedom, unless this increased freedom results in disastrous outcomes, is generally viewed as a positive outcome in and of itself.  If people have more freedom and demonstrate that with appropriate support, they can exercise this increased freedom, the project must be considered successful.  This must be the conclusion with respect to the Monadnock Self-Determination Project.  The primary outcome of the Monadnock Self-Determination Project was quite simply, increased self-determination.

Although increased self-determination is the ultimate outcome of this project, corollary positive outcomes were evident.  They are summarized in Table 5. Contrary to commonly held assumptions that "outcomes are slow to occur, making it difficult to measure successes and failures in the short run” (Gettings, 1995, p.8), this evaluation of 18 months of effort supports the conclusion that outcomes can be seen and measured rather quickly when the fundamental nature of the service system is changed.

It is worth emphasizing some of the findings summarized in Table 5. Participants significantly increased in their exercise of decision-making about their lives. Personal satisfaction with their lives improved.  For those who had circles of support, the average number of members increased by more than 50%.  The number of unpaid members of participants’ planning teams increased significantly, as did the number of members chosen by the person.  Finally, participants’ living environments became significantly more individualized and home-like, and many moved from group homes to supported or supervised living situations.

Perhaps the most informative outcome of all is the lack of change in adaptive behavior. In prior research, great emphasis was placed on skill acquisition, developmental progress, and achievement of self-care potential, that is, increases in adaptive behavior (Conroy & Bradley, 1985; Larson & Lakin, 1989).  Conversely, in the Self-Determination Project, people gained sharply in a variety of qualities of life, but not because they “learned” new skills or “earned” new rights.  The old way of thinking, the “readiness” model, would require people to “learn and earn” the right to make their own life choices.  The emphasis in such a model is on changing the person, and this kind of thinking has been sharply criticized (Taylor, 1988).  In contrast, the Monadnock Self-Determination Project sets self-determination as an inherent right, and not something that had to be earned.  The quality of life outcomes that accrued from this Project were impressive. Yet they occurred without changes in functional abilities.

Finally, Monadnock’s emphasis on individual budgets was a central implementation issue.  In other service systems, costs have been shown to have little or no relationship to individual needs or characteristics (Conroy, 1985; Stancliffe & Lakin, 1996).  In most systems, residential costs in particular are fundamentally congregate – they are computed as the total cost divided by the number of beds.  As such, individual needs cannot be strongly related to costs.  At Monadnock, the effort was made to design individual budgets entirely from individual needs, characteristics, and aspirations – and costs decreased.  This implies that an important direction for future funding policies and mechanisms will be to learn how to allocate and flexibly administer funds for people, in contrast to the currently dominant model of funding programs.

The best conclusion to draw from the two methods of analyses was that cost savings had been realized. Costs were reduced by between 12.4% and 15.5%.  Further research should serve to tighten these estimates, with improved bookkeeping methods tied to the individual budgeting process.  These figures lend very strong support to the original claim of the Self-Determination Project that costs would decline as individual control and autonomy increased. 

Limitations of the Study

Although this phase of the evaluation was rigorous and empirical, its limitations must be understood.  First, the design of the study was pre-post only (“before and after”), and did not include an analysis of a comparison group, although we do know that the non-participants were very similar to the participants.  Hence we cannot yet rule out the possibility that non-participants experienced the same positive outcomes as the participants.  Some concern must be expressed that the selection process interacted with the nature of the Project itself to produce the outcomes. 

The second limitation of this evaluation concerns its generalizability.  Replication is a hallmark of the scientific process, and it certainly seems reasonable to question whether the results of the Monadnock Self-Determination Project could be replicated elsewhere.  In asking this question, however, one must take care to identify replicable outcomes.  Certainly, budgetary control can be shifted in other agencies, but there is no guarantee that this structural change will lead to the same corollary outcomes noted in the Monadnock Self-Determination Project.  Perhaps such similarity of corollary outcomes should not be expected.  The purpose of self-determination is to support and permit individuals to make decisions about their lives.  This freedom to choose does not guarantee a positive outcome – merely freedom and perhaps dignity.  To the extent that the exercise of choice is an outcome, replicability seems likely.  Whether this exercise of choice invariably leads to the positive outcomes noted in the Monadnock Self-Determination project remains open to empirical validation.   We must note that New Hampshire is an unusual state in many ways, and Monadnock Developmental Services is an unusual agency.  New Hampshire was the first state to completely end its use of public institutions for people with developmental disabilities (Covert, MacIntosh, & Shumway, 1994), and many perceive New Hampshire as a leader in integrative service approaches.  Moreover, the Monadnock area is small and somewhat rural.  To the extent that these factors are unique, we cannot be confident that Self-Determination would yield similar corollary outcomes.

 Instrumentation is a third area of concern.  The Personal Life Quality Protocol is a collection of instruments whose psychometric properties are not fully understood.  As noted above, most reliability estimates are well within acceptable ranges for use in this type of research (Spreat, 1999).  Validation, on the other hand, remains open to question.  There is certain face validity to the notion that a scale that assesses how much an individual works is an index of productivity.  We must also note, on the other hand, that this package of instruments has been repeatedly tested for reliability over the years, as noted above.  Moreover, the package has been applied thus far more than 100,000 times in face to face visits with people, and is subjected to revision whenever necessary.  The scales have been found to be very useful in studies of deinstitutionalization, and by now conform very closely to what people and their families have told us is important to them.

Eleven statistical tests were run as part of this study, and nine of those tests yielded statistically significant results suggesting that people were “better off.”   We resisted the inclination to correct our alpha level via Bonferroni correction because of the exploratory nature of this study.  This study raises questions, rather than provides summative answers, and it is arguably preferable to cast a wider net to help set directions for future research.  One also notes that the binomial probability of getting nine significant findings out of eleven tests would be approximately .000001.

Finally, some analysts note challenges to Self-Determination. Involvement in more integrated services such as supported living and work may be associated with problems such as loneliness and poverty (O’Brien, 1993). Still others say that “unchanneled deference to choice can be an excuse for neglect” by professionals (Ferleger,1994).  Many believe that as people with disabilities gain control and power (self-determination), it can only be realized at the expense of someone else’s power (professional dominance).  Perhaps there is validity to some of these arguments, but there was an important distinction with respect to the Monadnock Self-Determination Project.  Rather than “unchanneled deference to choice,” the Monadnock Self-Determination Project linked responsibilities to the choices.  The budgets were finite, and within the limits imposed by the finiteness, needs still had to be met.  In addition, one must question the concern regarding increased choice absent negative outcomes.

 This independent evaluation has supported the viability of a new way of thinking about the organization of services and supports for people with developmental disabilities.  Further analyses may reveal that we would do well to reconceptualize our understanding of power and how it is applied in the lives of service users and professionals alike. We suggest that in order to analyze current policies and practices, as well as new initiatives such as the self-determination project, we must learn to understand power and how it is applied in the current system of services.  Perhaps viewing power as a zero-sum game (as so often is the case) may be a fundamental error (Shumway, personal communication, 1997).  Power sharing may be a more accurate way to conceptualize the notion of power (O’Brien & O’Brien, 1996).  Ultimately, the challenge for us all is in operationalizing our understanding of power in order to move beyond the rhetoric of self-determination, as was attempted in the Monadnock Region of New Hampshire. 

References

Anastasi, A. (1988).  Psychological Testings (6th Edition).  New York: MacMillan.

Balla, D., Butterfield, E.C., & Zigler, E. (1974).  Effects of institutionalization on retarded children: A longitudinal cross-institutional investigation.  American Journal of Mental Deficiency, 78, 5, 530-549.

Conroy, J. (1985).  Residential Costs for Pennhurst Class Members: Rhyme or Reason?  Technical Report 85-7.  Philadelphia: Temple University Developmental Disabilities Center.

Conroy, J. (1993).  The Personal Life Quality Protocol for the New Hampshire Self Determination Project.  Ardmore, PA: The Center for Outcome Analysis.

Conroy, J. (1995).  Reliability of the personal life quality protocol. Report Number 7 of the 5 year Coffelt Quality Tracking Project. Submitted to the California Department of Developmental Services and California Protection and Advocacy, Inc. Ardmore, PA: The Center for Outcome Analysis.

Conroy, J. (2002).  Quality of Life Changes Scale.  Havertown, PA: Center for Outcome Analysis.

Conroy, J., & Bradley, V. (1985).  The Pennhurst Longitudinal Study:  A report of five years of research and analysis. Philadelphia: Temple University Developmental Disabilities Center. Boston: Human Services Research Institute

Conroy, J., Feinstein, C., Lemanowicz, J., Devlin, S., & Metzler, C. (1990).  The Report on the 1990 National Consumer Survey.  Washington DC:  National Association of Developmental Disabilities Councils.

Covert, S.B., MacIntosh, J.D., & Shumway, D.L. (1994).  Closing the Laconia State School and Training Center: A Case Study in Systems Change.  In: V. Bradley, J. Ashbaugh, B. Blaney (Eds.), Creating Individual Supports for People with Developmental Disabilities: A Mandate for Change at Many Levels.  Baltimore, Paul H. Brookes.

Cronbach, L.J. (1971).  Test validation.  In: R. Thorndike (Ed.), Educational Measurement, Second Edition.  Washington, D.C.: American Council on Education.

Devlin, S. (1989). Reliability assessment of the instruments used to monitor the Pennhurst class members. Philadelphia: Temple University Developmental Disabilities Center.

Ferleger, D. (1994). The place of “choice”. In Sundram, C. (Ed.), Choice & responsibility: Legal & ethical dilemmas in services for persons with mental disabilities. Albany, NY: NY State Commission on Quality of Care.

Gettings, R. (1995). Managed care and developmental disabilities. Community Services Reporter. Alexandria, VA: NASDDDS.

King, R., Raynes, N., & Tizard, J. (1971).  Patterns of residential care:  Sociological studies in institutions for handicapped children.  London:  Routledge and Kegan Paul.

Larson, S., & Lakin, C. (1989).  Deinstitutionalization of persons with mental retardation: Behavioral outcomes.  Journal of the Association for Persons with Severe Handicaps, 14, 324-332.

McLain, R., Silverstein, A., Hubbell, M., & Brownlee, L. (1975).  The characterization of residential environments within a hospital for the mentally retarded.  Mental Retardation, 13, 24-27.

Moos, Lemke, & Mehren (1979).  Multiphasic Environmental Assessment Procedure.  Palo Alto, CA:  Social Ecology Laboratory.

Nerney, T., Crowley, R., & Kappel, B. (1995).  An Affirmation of Community: A Revolution of Vision and Goals.  Creating a Community to Support All People Including Those With Disabilities.  Durham, NH: University of New Hampshire Institute on Disability.

Nerney, T., Crowley, R., & Conroy, J. (1993). Self-Determination: A proposal to the Robert Wood Johnson Foundation. Keene, NH.

Nerney, T. & Shumway, D. (1996). Beyond managed care: Self-Determination for people with disabilities (first edition). (Available from the authors, University of New Hampshire, Institute on Disabilities, Durham, NH).

O’Brien, J. (1993). Supported living; What’s the difference? Syracuse University, NY: Center on Human Policy.

O’Brien, J. & O’Brien, C.L. (1996). A tune beyond us, yet ourselves: Power sharing between people with substantial disabilities and their assistants. Unpublished paper. Available from the authors, Lithonia, GA.

Pettinger, R. (2017).  Price controls- advantages and disadvantages. (www.economicshelp.org/blog/621/econonics/). accessed 8/6/18.

Pratt, M., Luszcz, M., & Brown, M. (1981).  Measuring dimensions of the quality of care in small community residences.  American Journal of Mental Deficiency, 85, 188- 194.

Shumway, D. (1997).  Personal communication, January 3, 1997.

Spreat, S. (1999).  Psychometric standards for adaptive behavior assessment.  Chapter in R. Schalock and D. Braddock (eds.) Adaptive Behavior and its Measurement (pp.103-118).  Washington, D.C.:  American Association on Mental Deficiency.

Spreat, S. (2019).  Revenue and expenses over five years in intellectual disability service providers in Pennsylvania.  Disability, CBR, & Inclusive Development, 29(4), 98-108,

Spreat, S. (in press). Thirteen Crises in Intellectual Disability.  London: Cambridge Scholars Publishing. 

Spreat, S. (2020).  Personal communication, January 25, 2020.

Spreat, S., McHale-Brown, K., & Walker, S. (2017).  PAR 2015 Direct Support Professional Wage Study.  Journal of Public Health Policy and Planning, 1(2), 50-55. 

Stancliffe, R. & Lakin, K. (1996). Analysis of expenditures and outcomes of residential alternatives for persons with developmental disabilities. Manuscript submitted for publication. (Available from the authors, Institute on Community Integration, University of Minnesota, Minneapolis, MN 55455).

Taylor, H., Kagay, M., & Leichenko, S. (1986).  The ICD Survey of Disabled Americans.  Conducted by Louis Harris and Associates.  New York:  The International Center for the Disabled, and Washington, DC: National Council for the Handicapped.

Taylor, S.J. (1988).  Caught in the continuum: A critical analysis of the principle of the least restrictive environment. Journal of the Association for Persons with Severe Handicaps, 13(1), 41-53. 

Valdez, B. (in press).  Choice and self-determination.  Chapter in S. Spreat.  Crises in Intellectual Disability.  London: Cambridge Scholars Publishing,.

 

Table 1

Characteristics of the Self-Determination Participants and Non-Participants

Characteristics Participants Non-Participants p
Average Age 39 42 NS
Average Years in Institutions 23 26 NS
Percent Male 46 54 NS
Percent with Other Disabilities 92 96 NS
Average Challenging Behavior Score 90 91 NS
Average Adaptive Behavior Score 61 69 .027
Average Productive Behavior Score 45 56 .012

 

* p< .05/26

 

Table 2

Perceived Changes in Quality of Life Over the Past Year

Qualities of Life Time-1 SD Time-2 SD Eta Sqrd
Health 3.60 .77 4.03 .66 .257
Running own life, making choices 3.46 .66 4.20 .68 .460
Family relationships 3.41 .92 3.53 1.05 .039
Seeing friends and socializing 3.46 .61 3.97 .66 .463
Getting out and getting around 3.54 .66 4.03 .79 .330
Day activities 3.46 .70 4.14 .81 .374
Food 3.62 .65 4.23 .65 .288
Happiness 3.63 .60 4.46 .61 .534
Comfort 3.63 .60 4.37 .60 .537

 

 

Table 3

Behavioral Changes

Behavioral Scales Time-1 SD Time-2 SD Signif.
Adaptive Behavior 59.9 18.52 59.5 18.87 .395 NS
Challenging Behavior 90.2 9.86 92.7 6.36 .050
Productive Behavior 45.9   51.9   .033

 

 

Table 4

Annual Per Person Cost Changes, 1994-95 to 1996-97
Two Methods

  # People 1994-95 1996-97 Change T p
Method 1 40 $62168 $54470 -$7698 4.02 .001
Method 2 22 $68294 $57699 -$10594 3.98 .001

 

Table 5

Summary of Individual Outcomes

Quality Dimension Outcome
Power (Decision Control Inventory) +
Personal Satisfaction Scale from Interview ++
Quality of Life Improvement in Past Year ++
Relationships with Family 0
Relationships with Friends 0
Circles of Friends, Number of Members ++
Integration, Outings +
Planning Team, Proportion Invited ++
Planning Team, Proportion Unpaid ++
Adaptive Behavior 0
Challenging Behavior ++
Vocational Behavior ++
Individualized Practices in the Home ++
Physical Quality of the Home ++
Minutes of Direct Service Per Day +
Hours of Day Program Activities Per Week ++
Earnings Per Week +
Health and Health Care  0
Costs 12-15% Lower

 

Key:

--  means a large change for the worse
-   means a change for the worse, not statistically significant
0   means no change
+   means a change for the better, not statistically significant
++ means a large change for the better

As many working in the field know, the current systems and infrastructure designed to support people with Intellectual and Developmental Disabilities (IDD) is unsustainable. To meet the market challenges shaping the system, Merakey, a developmental, behavioral health, and education nonprofit provider, is exploring technology to meet the needs of the IDD population, while adding value to the system. Our goal is to use technology supports to empower individuals to be more independent, while using fewer staff and government resources.

The intersection of three different industry-wide trends has presented an urgent challenge to our ecosystem: First, health care costs continue to rise at an exponential rate; second, demographics show that people with IDD are aging and therefore in need of more care; and third, the entire health care industry is facing a workforce shortage, leaving a dwindling number of qualified staff in place to care for the needs of these populations. Amid these larger trends, the Center for Medicare and Medicaid Services (CMS), the largest funder of services and supports for the IDD population, is pushing for greater independence, inclusion, and integration in how services and supports are delivered for these populations. To make this system sustainable in the years to come, there must be a move towards greater efficiency through innovation. 

One way to build this value into the system is by using technology to amplify staff to create a high quality, person-centered model of care. This is why Merakey has made the commitment to integrating technology into our programs and, more importantly, into our organizational culture. Founded over 50 years ago, Merakey is currently operating in 12 states and provides mental health services, intellectual and developmental disability supports, and education and autism solutions to adults, children, and families. Merakey leverages our expertise and extensive experience to develop innovative solutions and holistic models of care to meet the needs of individuals, their families, public and private health care funders, and community partner organizations.

Using smart home automation, remote medical supports, remote passive supports, communication technology, and wearable technology, Merakey is solving these systemic problems, while at the same time increasing the independence of those we serve. But this is a complicated process that is slowed down by payer regulations and traditional reimbursement models. It is not simply turning on a switch.

Merakey has spent a good part of the past seven years forming partnerships with multiple technology vendors, testing digital health tools, and incorporating technology into new care delivery models. Our focus has been on creating opportunities for better communication, better health, and greater independence within a person’s home and internal world. Since 2013, we have successfully implemented smart home/independent living technology for safety and independence for six individuals; remote active clinical and passive monitoring for medical and activity management for more than 50 individuals; and applications for transportation accessibility for 30 individuals. To date, we have more than 450 individuals utilizing various methods of communication technology. This includes adaptations to applications and customized devices to allow for safe internet use and communication with family members and friends. 

As we embarked on our technology transformation, three main goals emerged: One, to determine which technologies, if any, can allow for an improvement in living conditions and the care being delivered in selected facilities; two, to judge the acceptance of the technologies by both the staff and individuals with disabilities and mental illness; and three, to assess whether the technologies should be rolled out to other facilities with similar care models.

During our first round of technology pilot programs, data were continuously collected from multiple locations to determine if the technologies resulted in an improvement in living conditions and to judge the acceptance of the technologies by both the staff and individuals. Standardized staff questionnaires were self-administered and, similar to the questionnaire for individuals with disabilities, repeated at three-, six- and 12-month intervals. The Glasgow Depressions Scale was administered by staff members at the inception of the project and at six- and 12-month intervals. Preliminary findings indicate that the technologies have exceeded expectations, resulting in plans to expand to other facilities.   

To ensure that the use of technology is person-centered, we focused on identifying individual barriers that prevent people from living meaningful lives and to find innovative ways to help people reach what they define for themselves to be a quality of life they desire. Merakey has found, throughout all our exploration, that not all technologies work for every person. But through staff training and making technology a regular part of our programs, staff now see exploring technology as part of our regular processes.   

To help with this process, we developed an assessment tool, which is part of our electronic health record, that matches the goals and outcomes identified for each individual that we support to the technological solutions that are available. This technology assessment is now incorporated into every individual service plan.

Currently, our technology initiatives have been funded by grant support. A sustainable financial model can only exist if the care delivered with the use of the new technologies is reimbursable by Medicare and Medicaid as billable services that can be reimbursed. Several states have granted Medicaid waivers that can now allow reimbursement for care delivered with some of the selected technologies, but not all the services delivered using the selected technologies are reimbursable. Merakey is currently working with Medicaid health plans in several states to explore reimbursement options and will be testing funding models with several individuals this year.

While Merakey continues to create new ways of improving people’s life outcomes and to fine-tune what we have already accomplished, we are expanding our focus to include the community. What technologies can help a person to leave their internal world and access all that the external world has to offer? To be able to access their favorite shopping malls, places of worship, place of employment, social events, medical appointments, and other community activities? And how can they do that as independently as they desire -- choosing to experience it with or without others?

There is an entire world of technology that has already been developed and that continues to be developed to make these dreams become real. In our next phase, Merakey is exploring how we can take a more “whole person” approach that focuses on how technology can help people with IDD to gain full independence. We are focusing on testing current transportation systems and navigation systems to get places, communication devices for independent communication, devices that use prompting software as task reminders, smart canes for visually impaired navigation, and other technologies that make this journey to independence possible.   

 

 

Author bios

Rene Burke, MS, BSN, RN has more than 33 years of experience in the fields of medical/surgical nursing, renal and liver transplantation, research, nursing/hospital administration, nonprofit management, and project management. Rene currently serves as a business development consultant for Merakey where her consultative work focuses on the research, development, and design of methods to incorporate many forms of assistive technology into existing or new care models. She develops technology programs that work toward goals of increasing independence, raising the quality of and access to care that uses fewer staff and government resources. For more than 10 years, Rene provided operational leadership for all professional services at Allegheny Valley School, a subsidiary of Merakey, supporting people with Intellectual and Developmental Disability. Rene holds a Master of Science degree in Nonprofit Management and a Bachelor of Science degree in Nursing. 

Sherri Portnoy, MBA, SPHR has more than 25 years of experience in nonprofit administration. She is currently the Vice President of Professional and Administrative Services for the Intellectual and Developmental Disabilities Division at Merakey. Sherri is responsible for staff development, professional services, special projects, strategic planning, liaison to human resources, and quality improvement. She oversees the technology-focused initiatives for individuals with cognitive disabilities. Prior to joining Merakey, she was employed as a health care consultant for a large law firm in Philadelphia, Pennsylvania. She serves as a board member for BARC and is chair of its’ human resources committee. She is a former adjunct faculty member of DeVry University in Philadelphia, Pennsylvania. Sherri has presented at international and national conferences and co-authored several papers promoting the use of technology. 

Shaleea Shields has been an integral part of the Merakey team for more than 15 years. Currently, Shaleea serves as Merakey’s IDD Innovation Manager, heads the Merakey Career Enhancement Program, serves as the chairperson for the IDD division’s policy committee, participates as a member of Merakey’s Corporate Learning Collaborative, and acts as a project manager on several technology initiatives. During her time at Merakey, Shaleea has led the implementation of many technology projects, including two smart homes, communication technology programs, transportation technology, and a project focused on improving quality and services through a nursing model change. Shaleea is a member of the Commonwealth of Pennsylvania’s Office of Developmental Programs Policy Taskforce, and she has presented at international and national conferences and co-authored several papers promoting the use of technology.  

 

Medical Center at Woods
Image Credit: Woods Services

The Issue

While most of the five million Americans with intellectual or developmental disabilities (I/DD) live independently and with few or no supports, about 22 percent of them have multiple co-occurring chronic conditions requiring highly specialized care. Some of these conditions include diverse genetic and neurologic conditions, including traumatic brain injury, autism spectrum disorder, muscular dystrophy, cerebral palsy, and epilepsy. 30 to 35 percent of persons with I/DD have a dual psychiatric diagnosis.1,2 The cost of this care is high, especially for those with dual diagnoses. Total Medicaid spending for clinical services as of 2018 is $592 billion,3 with Medicaid expenditures for people with disabilities totaling $186 billion in 2014,4 or 30 percent of expenditures. Community-based services alone for people with I/DD totaled 53.5 billion in 2018, which accounted for 68 percent of all home- and community-based waiver spending, an even greater percentage than for the aging population.5 Long-term services and supports for people with I/DD, which includes personal care supports and supports to carry out the activities of daily living, totaled $42 billion in 20146.   

The on-going trend over the past several decades of moving people with I/DD out of institutional settings and into community homes has also advanced the need for providing all types of services in community-based settings.7 Health care services were largely provided within these institutions, by providers knowledgeable about the needs of the population.8

However, health care providers were not always prepared to serve this population and were not well-versed in their specific needs. This issue remains a problem today.9 People with all types of disabilities are at greater risk of multiple chronic diseases10, and yet these diseases may be undiagnosed or poorly managed when a person’s disability overshadows other health conditions.11

Barriers to Access

Many children and adults with I/DD and behavioral and medical challenges still experience multiple barriers to affordable, quality health care. For example, unlike the cursory physical exams most people are accustomed to, primary care visits for people with I/DD take an average of 45 minutes to an hour, given the complexity of their medical, emotional, and behavioral conditions.12 There is a lack of formal training for health care providers on the health care needs of people with I/DD. Most private physician practices do not accept Medicaid, the primary insurer of adults with I/DD. These practices cannot afford to care for this population, with the perceived risks and complexities that require more time for visits, significant accommodations and flexibility in conducting patient visits, the need for alternative methods of communication using pictures and technology, the need for more space and specialized equipment in exam rooms, and the frequent need for information-gathering from families and direct care staff for patients with communication barriers.13

Health Disparities

The barriers to primary care access lead to a marked health disparity between persons with I/DD and those without I/DD.14 These disparities result in people with I/DD being more likely to live with complex health conditions, miss cancer screenings, have poor access to oral health care, have poorly managed chronic diseases, be obese, and have undetected poor vision.15 Mortality rates from preventable conditions are higher for people with intellectual disabilities than that of the general population.16

Innovative Solution 

Woods Services as a population health management organization has developed an approach to address the medical, behavioral, clinical, education, and housing needs of children and adults with developmental disabilities, autism, acquired brain injury, and complex medical and behavioral challenges. Woods has over a hundred years of experience providing integrated care to this population, including expertise with people with specialized health care and other needs. Some of the specialized needs addressed include psychiatric disorders, seizure disorders, communication disorders, dysphagia, and complex medical conditions that are associated with some genetic disorders, including Prader Willi Syndrome. Clinical and other population health services provided in an integrated way include primary care, behavior supports, psychiatric services, occupational, physical and speech/language therapies, nutrition services, community participation services, and vocational support and job coaching. Medical and nursing services are coordinated by the Medical Center at Woods, using a Patient-Centered Medical Home approach. 

In June 2019, Woods opened its newly expanded on-campus Medical Center and launched a Patient-Centered Medical Home program in collaboration with Keystone First, Pennsylvania’s largest Medicaid provider and the insurer of many of Woods’ Pennsylvania clients. Keystone First agreed to provide more support to cover the primary care visits for Woods patients treated at the Medical Center. The Patient-Centered Medical Home pilot program – the first of its kind in Pennsylvania for people with intellectual and developmental disabilities and significant medical complexities – was expected to improve care coordination that would lead to a reduction in emergency room visits, hospitalizations, and gaps in care. At the end of the first year of the pilot, positive results were evident. These included a 35 percent reduction of in-patient hospitalizations over the prior year and a 39 percent decrease in in-patient expenses. Additionally, emergency room costs went down by 2.3 percent and total costs declined by 8.7 percent.  

Gaps in care, especially for those with chronic diseases, were also reduced significantly during the pilot year. Conversely, primary care provider visits at the medical center on Woods’ campus increased by 326 percent, meaning that each person was seen more frequently throughout the year by his or her Woods’ doctor, providing consistency and individualized, familiar care for each patient. Some of these outcomes were the result of not only the increase in primary care visits, which identified preventable conditions that might otherwise have landed patients in the Emergency Room, but also shifts in how services were coordinated and tracked using a new electronic health record. The ability of providers to work as a team was also enhanced. Other improvements included extending service hours at the Medical Center and adding advanced services at the Medical Center such as radiology and lab facilities. 

As important as these outcomes are, it is also critical that all providers are familiar with and responsive to the needs of the patient population served to reduce anxiety and negative behaviors on the part of the patients. To further this goal, Woods nursing leaders met with the staff of the emergency department of the nearest hospital, providing training for providers and strategies on making waiting room space more accommodating to people with I/DD or autism who experience anxiety or need a quiet space to reduce anxiety. Woods has also established relationships with area medical schools and health systems, which has expanded its ability to bring in more specialists needed by this population, and to serve as a training ground for the next generation of providers who will effectively serve people with I/DD.

Sharing the positive results of the Patient-Centered Medical Home pilot is one way to disseminate best practices for providing integrated, comprehensive care for people with I/DD and complex behavioral and health care needs. In addition, Woods intends to make this approach scalable by expanding its services through telehealth, which has the potential to reach people in community-based group homes and in rural areas, where providers are scarce and people continue to experience barriers to care. 

Author bios

Tine Hansen-Turton, MGA, JD, FCPP, FAAN, President and Chief Executive Officer of Woods Services, has more than 20 years of experience in health and human services senior management, executive leadership, and consulting. She has founded and led several nationally recognized organizations and trade associations. A proven results-oriented strategic leader, Ms. Hansen-Turton is known for being an effective change agent and policy and health and human services systems reform advocate. For the past two decades she has been instrumental in positioning Nurse Practitioners as primary health care providers globally. She serves as the founding Executive Administrator for the Convenient Care Association, the national trade association for over 2200 private-sector retail clinics. Ms. Hansen-Turton teaches public and social innovations, leading non-profits, and health policy at University of Pennsylvania Fels Institute of Government and School of Nursing, respectively. 

Liz Hayden, MPH and MS Ed, is Strategy Development Director at Woods Services.  She is responsible for providing strategic guidance in program and resource development to Woods and its family of affiliate organizations, identifying funding opportunities and writing grants, concept papers and policy papers. She brings more than 25 years of program development and management in social services, public health, adult literacy, ESL, intergenerational programming, and higher education to her role.

Works Cited

1 Braddock, D. L., Hemp, R., Tanis, E. S., Haffer, L., & Wu, J. (2017). The state of the states in intellectual and developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities.

2 Ervin, David A., Ashley Williams, and Joav Merrick. "Adults, mental illness and disability." International Journal on Disability and Human Development 14.2 (2015): 101-103.

3 www.kff.org/medicaid/state-indicator/

4 www.kff.org/medicaid/state-indicator/

5 Medicaid Home and Community-Based Services Enrollment and Spending. (2020) Issue Brief. Watts, Musumeci, & Chidambaram. Kaiser Family Foundation.

6 Overview of Long-Term Services and Supports and Medicaid. Final Report. (2018). RTI International, Washington, DC. 

7 Li, S. Community-Based Residential Alternatives for Persons with Intellectual and Developmental Disabilities: Current Practices, Trends and Issues. (2014). Milken Institute School of Public Health, The George Washington University.

8 Ervin, David A., et al. "Healthcare for persons with intellectual and developmental disability in the community." Frontiers in public health 2 (2014): 83.

9 Ibid.

10 World Health Organization. (2011). World Report on Disability.

11 Krahn, Gloria L., and Michael H. Fox. "Health disparities of adults with intellectual disabilities: what do we know? What do we do?." Journal of Applied Research in Intellectual Disabilities 27.5 (2014): 431-446.

12 Ervin, David A., et al. "Healthcare for persons with intellectual and developmental disability in the community." Frontiers in public health 2 (2014): 83.

13 Ibid.

14 Ibid.

15 Ibid.

16 Ibid.

More Articles ...