Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities

Statement

Community living is a major focus of national policy and related litigation (e.g., the Americans with Disabilities Act in 1990, the Supreme Court Olmstead v. L.C. decision in 1999, Workforce In­novation and Opportunity Act in 2014, and the Home and Community Based Services Final Rule in 2014). Increasingly, public policy is promoting and requiring that federal funding be used to support people to live, work, and participate fully in their communities.

Community living and participation means being able to live where and with whom you choose; work and earn a living wage; participate in meaningful commu­nity activities based on personal interests; have relationships with friends, family and significant others; be physically and emotionally healthy; be able to worship where and with whom you choose (if desired); have opportunities to learn, grow and make informed choices; and carry out responsibilities of citizenship such as paying taxes and voting.

Of the estimated 6.2 million people in the United States with intellectual or develop­mental disabilities (IDD), most live with their families and many need and receive long-term services and supports. When people live outside of their family home they have several options for community living, including opportunities to live in apartments with individualized support, with one or two other people with support, with host families, and in small group homes with other people with disabilities and 24-hour support. Unfortunately, many people with IDD also may still live in large, segregated congregate places including large group homes (with 7 or more people living there), residential programs located on campuses, and state and private institutions, which could limit community inclusion.

The benefits of living in smaller commu­nity settings are well-documented. People who live in these environments have more choices and control over their lives, have more friendships, are engaged in their communities, are safer, and experience greater life satisfaction. The ability to live and thrive in individualized living situations and be in charge of their own home (e.g., staff schedule, what/when they eat, who visits and when) is possible for all persons regardless of need when the funding and supports are made available to them. That is, all people, regardless of the significance of their disability, can lead lives they control by being supported to experience the opportunities that com­munity life offers and to choose how they will participate in their communities. All too often, many individuals with IDD are never afforded these opportunities and, in many instances, there is systemic denial of choices due to constraints of service delivery systems to provide such opportu­nities. Instead, low expectations sometimes held by professionals, families, community members, and others who touch the lives of people with IDD result in perpetu­ated assumptions that people with IDD need and require 24-hour support, group employment, and group living. Approaches such as Community First and Employment First statewide initiatives emphasize an alignment of policies, funding, and prac­tices to promote people with disabilities living, working, and contributing in their communities as the first option in the provision of services and supports.

Despite the evidence, there is a growing interest in many states by some advocates to move away from community living in favor of building new congregate programs that segregate people with IDD from their communities (e.g., working farms, campus models and gated neighborhoods). Often the interest and desire to create new congregate settings is in response to advocates’ frustrations with: a) long wait­ing lists for community living, b) issues related to quality of community services, c) lack of options that are person-centered and able to meet the specific needs of each individual person, and d) staff who are not adequately prepared and not specifically trained to support people with certain types of significant needs. These concerns

about community living are both real and significant, but the solution to return to building large, segregated, isolated living programs is not the answer to improving quality of life for people with IDD and could result in less positive outcomes. It is tempting to revert to institutional-type congregate settings when the resources or capacity to improve community living options are lacking. The alternative is to create and advocate for high quality com­munity living options that are supported by federal and state governments. It is also important to make people aware of what is possible and what practices exist that result in quality community living. People with significant disabilities do, can, and should live in the community with the support they need and deserve. They have a fundamental right to do so.

Issues

Access to community services. Many people with disabilities experi­ence access challenges to individualized community supports. There are many issues that create barriers for people with significant disabilities to live and work in the community. Some of these are:

• Nearly every state has significant waiting lists for Home and Community Based Services, the foremost funding source for community living. Recent data (2013) indicates an estimated 232,204 people in the U.S. are on waiting lists for community services.
• Many states have built systems that utilize group homes as a key way to support people in the community. When people find themselves in a situation where they need to live outside of their family home, they are often placed in an “open bed” versus being offered person-centered supports designed specifically to meet their needs. In many of these situations, people remain as isolated in these settings as they do in a large-scale institution. A process for creating and sustaining supports that make their living situation a home in a neighborhood is needed.
• In most states and communities, it is not unusual for people with IDD to transi­tion from school to sheltered workshops or non-work day services with little opportunity to move out of those envi­ronments into supported or competitive employment. These assumptions place low expectations on people with IDD and both underestimate and undermine their potential achievement of supported or paid community employment.
• People with IDD do not have equal access to various forms of technology (e.g., communication devices, mobility devices, smart home, digital information) that could greatly increase their ability to live and work in the community.

Quality in community services. There is wide variability of quality within community residential, employment, and other support models across the U.S.:

• Ensuring the quality of community living is an ongoing challenge in the United States. Federal requirements related to quality do not exist and each state develops, implements, and monitors the quality of programs in different ways. This leads to wide variability in quality of services that often lack characteristics that are necessary to promote a self-determined, interdependent life for people with IDD.
• Many of the best practices that have evolved to promote community living and participation have not been brought to scale (e.g., individualized supported living, supported employment, tech­nology, supported decision making). The best models are not disseminated broadly nor funded in ways that provid­ers can fully implement. Sufficient, affordable models don’t exist for agen­cies that provide the best services to share their practices with others. 

Funding for community services. The various funding mechanisms used to support community living and employ­ment are using antiquated models; the funding policies are not flexible, do not meet the needs of individuals, and over-rely on 24-hour staffing models:

• In the United States more money is spent per person on institutional and segregated services than is spent on community living and supported employment. $260,970 was spent on institutional services per person (2013 state operated ICF/IID expenditure) compared with $42,713 on community (2013 HCBS expenditure).
• About $7,000 annually is spent per person on supported and integrated employment including both individual jobs and group supported jobs by state IDD agencies. For all day and employ­ment services the annual expenditure is about $13,000 per person. While an estimated $947 million is spent in total by state IDD agencies on supported and integrated employment, over $7.2 billion is spent on sheltered or seg­regated employment and non-work day services. Integrated employment represents 13.5% of all spending for day and employment services (2014 expen­diture data).
• The costs of archaic service models result in many people with IDD unnec­essarily receiving 24-hour daily supports and they are therefore being over-served.
• Medicaid is a health care program based on a medical model of services and supports and often creates a lack of flex­ibility in funding systems. This can lead to the inability to readily respond and adapt in a timely manner to the chang­ing needs of each individual at any given point in time based on their unique context and individual characteristics.

Workforce challenges. The ability to meet the needs of people with IDD in the community, ensure quality of commu­nity services, and offer more flexible and individualized options requires a better compensated, stable, highly ethical, and competent workforce:

• It is difficult for individuals, families, and providers to find and keep direct support staff. The demand for workers far surpasses the number of qualified job seekers, resulting in a significant personnel shortage.
• The direct support workforce is paid low wages (national estimated average is $10.50 per hour) and consequently most direct support professionals work more than one job in order to pay their bills. This results in high levels of burnout and resignations, and workers who are often chronically tired.
• Direct support professionals have demanding roles, both physically and psychologically, and as a consequence have one of the highest rates of work­force injury.
• The direct support workforce has few opportunities for training and profes­sional development. Training require­ments that do exist in states are not comprehensive nor do they ensure that direct support staff are trained to meet the needs of the people they support. This has resulted in diminished quality and a caretaking model of service instead of one that creates high expectations of people with IDD and supports them in learning, growing, and developing new skills for community living and work.

Position

Everyone with an intellectual or devel­opmental disability deserves to live in the community where they have the oppor­tunity to experience vibrant lives that include work, friends, family, and high expectations for community contributions. Our systems to support people with IDD should promote individual growth and development through the provision of best practices in fully integrated community settings. It is essential to close institutions and at the same time create and support our existing communities to develop the capacity to support all people with IDD in their communities through individualized supports that:

• Ensure federal, state, and local govern­ments have an infrastructure in everyexisting community that results in people with IDD getting the support they need to live and work in their communities. This infrastructure should also focus on the need for community intervention and strongly encourage communities to take responsibility for full inclusion of people with IDD in all aspects of community life.
• Ensure a skilled, stable, and fairly com­pensated workforce that adheres to high ethical standards to support people to live self-determined lives in the community.
• Promote public policy that provides incentives for states and local commu­nities to expand access to individualized community living and employment. This funding should be spent on inte­grated inclusive community services and incentives provided to states and local governments to move away from segre­gated programs such as day programs, sheltered workshops, and congregate living.
• Expand the availability and use of technology by people with IDD to further promote community living and employment.
• Expand opportunities for self-directed funding and services that put the indi­vidual with IDD in control of designing, implementing, and monitoring their services and supports.
• Ensure there is an infrastructure and ca­pacity in existing communities designed specifically to meet the support needs of people with complex health and behav­ioral challenges.
• Ensure community living supports are adequately funded and are of high quality.