Supported Living/Home of Your Own
- Participants will understand that a flexible, responsive system of supports for the families of children with disabilities is the cornerstone for a true system of community supports for people with developmental disabilities.
- Participants will understand the need for all individuals to experience changes in lifestyle across the lifespan.
- Participants will know/understand the importance of home ownership/control as one of the defining characteristics of adult life in our culture.
- Participants will understand the basic principles and strategies being used to support people with developmental disabilities in their own homes across the lifespan.
Why This Topic Is Important
For most of the last two centuries, there were only two choices for families and people with developmental disabilities:
- Stay at home, with no support outside of the family; or
- Live in an institution.
Then we, as a society, learned two important lessons:
- It makes far more sense—morally, socially and economically—to support families to stay together.
- It makes no sense—morally, socially, economically, medically, or legally—to deny people their rights by institutionalizing them. It is better for everyone if people with developmental disabilities are supported to live in the community, as part of the community.
Together, we have made a lot of progress in the fight to make sure families have the resources they need to stay together. As a society, there is a great deal of agreement that children with [developmental disabilities] should:
- Live in a family;
- Grow up enjoying nurturing adult relationships both inside and outside a family;
- Learn in their neighborhood school in a regular classroom [with] children without disabilities;
- Play and participate with children, with and without disabilities, in community recreation and other leisure activities.
While some people contend there will always be a need for traditional institutions, the trend is clear: in the 21st Century, it is COMMUNITY FIRST.
We must remain vigilant in our efforts to ensure families are supported and institutions are closed. We must also turn our attention to other challenges confronting people with developmental disabilities, their families, friends, and allies. The full inclusion of people with disabilities as valued members of our communities can be achieved by ensuring presence, participation, competence, choice, and contribution.
How we live, where we live, with whom we live—each of these have an important impact on inclusion and belonging. The nature of our homes has a lot to do with how other people see us. People who are seen as deserving only a “home-like” environment are not as valued as those who are seen as worthy of owning their own homes. People who live in residential facilities or other segregated places are not as valued as people who have a home to go to. People who are not allowed to choose with whom they live, or where they live, or when they eat, or what they eat, and so on, do not have control over very important parts of their lives.
The challenge is to impress upon policymakers, administrators, university researchers and educators, direct service providers, and our neighbors that community support of people with developmental disabilities and families requires fundamental changes in how we think and act. Family support cannot be seen as simply 14 days of respite per year, parent counseling, or sibling support groups. It must be seen as "whatever it takes, for as long as it takes." Family support means responding to the needs of each family as a unique family. At the same time, families and/or individuals with disabilities don’t always have to be dependent on the service system for their needs. They can also investigate the natural supports (friends, neighbors, church members, and/or many others) and generic services (the same things used by people without disabilities, like local businesses, park and rec, volunteer organizations, etc.) that are already available in their communities. When individuals/families use natural supports and/or generic services, they’re also assured of being included, just like people without disabilities.
Having a home of your own should not be a game of “let's pretend”—trying to convince ourselves and others that a group home is really just like a college dormitory or an army barracks, where people with a shared interest live together.
Not long ago, it was unimaginable to think about people with developmental disabilities owning their own homes. It was unimaginable to think of families having control over the resources they receive and having a real say in what those resources should be. Today, the unimaginable is not only imaginable, but is actually possible and real.
Together, we can create opportunities that are better than we can imagine. We can continue to make the unimaginable happen.
Being in Control
Most of our service models, funding structures, quality assurance mechanisms, and public policies related to people with developmental disabilities have their roots in the institutional model. Community membership of people with disabilities requires totally new ways of planning, funding, and supporting people. Choice and control are central to developing these new ways.
The system should be there to support families and people with developmental disabilities to make choices and be in control of their lives. The system should not be there to take control over what people need, how they should live, and/or a narrow range of choices that are offered. The fact that families and individuals need assistance and support should not overshadow or define their entire lives. There is nothing inherent in raising a child with a disability that should require families to complete myriad forms and await endless approvals to confirm what families already know about the needs of their children. The need for support in certain aspects of life should not require adults to give up their rights to make decisions about how they wish to live. We need policies, practices, and funding systems that support, respect, and affirm the home, the family, and the choice of each individual.
Many people with developmental disabilities have grown up at home with their families and lived as adults in our communities. Yet only in the last 25 years or so has there been a sustained movement to assist families to meet some of the additional demands that may come with raising a child with a developmental disability.
In the past, public policy (or the absence of it) was based on the belief that raising a child is a private, not a public or shared, responsibility. The advice of medical professionals and friends alike was, "Put the child away and get on with your life." Children with disabilities were seen as burdens. In this climate, many families had limited options: it was go it alone or place their children in institutions. When families did not have the resources to meet their child's needs and continue to function as a cohesive family, the choices narrowed.
Parents who chose to ignore professional opinion and raise their children at home frequently had to continually justify this decision to others. Our society did not see children with developmental disabilities as children. “They” were not like other children. "They" did not need the nurture, warmth, care, concern, and commitment of their parents to develop into well-rounded people, since “they” would never fully develop.
The efforts of advocacy organizations and decisions in court cases began to dismantle the institutional model, and community-based services replaced institutional-based services for adults with disabilities. It became clear that it is possible to support people with significant disabilities to successfully live in the community.
Policymakers were then called on to provide community services and supports to help parents, and "alleviate the stress of raising a child with a disability." Respite programs emerged, as well as parent counseling aimed at "assisting parents to come to terms with their child's disability." There were calls for investing public money in supporting the family rather than replacing it with institutional care.
Advocates pointed out that most states operated two distinct systems of child welfare. One system was for children without disabilities. It emphasized the importance of strengthening and maintaining the family home, and supported the right of children to grow, develop, and be nurtured in the natural family environment. The other system—the Developmental Disability system—generally denied the importance of a natural home-life and failed to recognize any rights of the child. When the fight for a free and appropriate public education was won, the door was opened to eliminate the separate and unequal approach to child welfare.
Since about 1980, grassroots parent organizations have pressured policymakers to change their thinking, priorities, and funding methods. Advocates have insisted that all children have a right to grow up in a real home with a family. They have fought for family-focused services as the first priority in the state's developmental disabilities budget. This family support movement has developed a core of policies and practices that begins to define a true community system of services and supports.
The cornerstone of a family-centered approach is the idea that families need to exercise choice and control over decisions that impact their daily lives. Parents need to be affirmed in the depth of knowledge they have about their children and family. Professionals are most effective when they abandon a judgmental diagnostic model of service and join in partnership with families to address the unique needs of the family. When the community (including public, private, formal, and informal resources) joins with families of children with disabilities to mobilize resources and build connections, great progress can be made.
The trends in family support are quite positive. Nevertheless, constant vigilance is still required to protect the progress made and push for increased responsiveness to families. The threats are real:
- In some areas, children with disabilities are still admitted to institutions and/or nursing homes.
- There is not universal agreement that group care settings (nursing homes, group care homes, etc.) are totally inappropriate for children.
- Family support programs still receive a small percentage of total funds in developmental disabilities budgets.
- In many areas, family support still leads a precarious existence because it is not firmly embedded in the core of legislation or budgets.
A number of barriers continue to make it difficult for people with developmental disabilities to have their own homes:
- They are poor.
- Their parents might be so desperate for security in the future, they take the first placement that comes along.
- There is a huge human services industry based on housing adults with developmental disabilities in congregate facilities.
There are also many more opportunities for people with developmental disabilities to purchase or lease single-family homes, duplexes, condos, and units in housing cooperatives. Service and funding options are expanding to make home ownership and housing rental a reality.
The advantages of home ownership or consumer-controlled housing support the principles of self-determination:
- Permanency: Homes are not lost when service providers change.
- Community inclusion: Living near people and places of one’s choice increases community participation.
- Freedom: Privacy is more easily assured; the rules are made by those who live in the home.
- Respect: Home ownership is part of the American Dream!
- Responsibility: Managing a home and household activities are equated with being an adult and having a meaningful role in the community.
- Economic Gain: Choice of housing and housing arrangements can free up funds for other expenses. Homeowners and renters contribute to the local economy.
- Location: Living close to work, transportation, shopping areas, friends, and family reduces dependence upon others.
- Choice: Control of housing includes controlling with whom one lives.
- Independence: Selecting services and service providers that best meet one's individual needs, regardless of where the person lives.
Support for Adults in Their Own Homes
Just like people without disabilities, people with developmental disabilities want a piece of the American dream. They want a home of their own. Home—your space, where you’re in charge, where you can be yourself and not who someone else wants you to be. Home—the place where you pick your housemates. Home—the place that the United States Constitution protects from government intrusion. Moving out of your parents' home, getting your own place, and setting up housekeeping are the signs that you’re an adult.
In addition to government sources, individuals with developmental disabilities, often with the help of family and friends, are developing other strategies:
- Using the Fannie Mae Foundation and its approved lenders to finance the purchase of a home.
- Becoming part of Habitat for Humanity.
- Parents bequeathing the family home directly to the family member or putting it in trust, for use by the family member.
- Family and friends financing a house, and renting out part of it to earn money toward paying off the mortgage.
- Several people with disabilities pooling their own resources to buy/rent a home together.
In every community across the nation, parents look forward to the day when their sons and daughters settle into a stable and secure adult lifestyle. Parents of young adults with developmental disabilities may look forward to the help of the adult services industry. Unfortunately, however, the way many service providers operate can cause parents to feel nervous and fearful, instead of feeling secure.
When a person with a disability needs daily assistance, the best that many systems can offer is a place on a waiting list for “placement” in a group home. Often, the waiting lists are far too long. A person may move up higher on the list only if he/she is in crisis. There’s little hope that families will be able to arrange a smooth transition into adult life for their children. Often, adult children with disabilities live with their parents until the parents die or become incapacitated.
Fear, anxiety, panic prevail. Time is running out; parents wonder, “What happens when we're gone?” Many become so desperate for some sense of security that they’ll grab at anything that looks like a solution. Decisions are often made based on “what’s available,” rather than the desires or preferences of the person with a disability, or even the parents. The priority is some measure of security for the future. It’s easy to appreciate how any available placement right now might be seen as better than the uncertainty of a future driven by crisis. Sadly, the result may be same. Whether parents act out of desperation, or systems respond in crisis, the person with a disability is placed in a facility where the rhythm of daily living is managed and controlled by others.
Unfortunately, much of the professional literature and popular media perpetuate the myth that people with developmental disabilities require housing in "home-like environments." The institutional mindset is alive and well. On top of that, a huge industry has developed to provide residential services. This industry manages and controls the lives of adults with developmental disabilities.
This community residential services system has great diversity. At one extreme, there are community organizations that support people to live in their own homes. The organization provides support, but does not control the housing. There are also small group homes managed by efficient, responsive organizations. They try to make it possible for the people they serve to have some degree of control over the places they call home. At the other extreme are large, corporate, adult foster care homes where people with developmental disabilities are commodities.
Several factors are creating a climate that is ripe for reform:
- Strain: An unresponsive system that places high stress on families and plays on their worst fears.
- Awareness: An awareness of advocates and committed service providers that a "community system" designed and operated within an institutional framework doesn't work. Carefully managed, normalized environments hurt rather than help.
- The Voice of Self-Advocates: A persistent demand from adults with developmental disabilities that they want choices and control over their own lives.
As the segregation of the past is being rejected, new ideas emerge:
- A continuum of services and the idea of least restrictive environment create the illusion that people need tightly managed settings. The real need is not restriction or limited options, but services and supports in the most integrated setting that are geared to each person's needs and preferred living situation.
- Group living and home-like environments must be replaced with services and supports to individuals in their own homes.
- We must engage in more respectful relationships with people with disabilities. We need to really listen, so we can hear what they say: "I want an education, a home, a job, friends, a family." These are achievable goals that were once written off as unrealistic.
- Professional roles must be redefined as assisting people to achieve a wide range of natural and diverse human goals, and figuring out what it means to work “with” or “for” people with disabilities.
We must redefine our priorities:
- Concentrate on identifying individual and collective strengths rather than deficits.
- Explore personal hopes, dreams, and goals.
- Abandon "unrealistic expectations" based on diagnostic categories. Expectations related to the attainment of personal life goals supersede minimal expectations related to the achievement of programmatic goals.
- Replace a crisis-intervention mentality with a proactive crisis-prevention perspective that identifies formal and informal resources, and develops multiple back-up strategies.
- Understand that support is not a program that ends; it’s a long-term commitment.
Most service systems have not begun to figure out how to get out of the real estate business and convert resources to providing supports. However, a growing number of responsive organizations are beginning to provide truly individualized supports to adults with developmental disabilities, including individuals with very complex and significant needs, in their own homes. The poverty that’s so often associated with people with developmental disabilities raises new challenges as housing is separated from supports. If people are not living in a program, they need to go out into the marketplace to obtain housing. While these difficulties are not insurmountable, they underscore the many barriers that still hamper adults with developmental disabilities from choosing where and with whom they live.
The Olmstead Decision
The right of people with developmental disabilities to live in the community was reinforced by the July 13, 1999 decision of the United States Supreme Court in Olmstead v. L.C. and E.W. Lois Curtis and Elaine Wilson wanted to receive services from the state of Georgia in the community instead of in a psychiatric institution. They argued that Georgia violated their right to services in the most integrated setting under the Americans with Disabilities Act (ADA). Their case went all the way to the Supreme Court, and the Court ruled that the ADA requires States "to place people with mental disabilities in community settings rather than in institutions when the State's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individuals, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities."
Unfortunately, the decision still leaves room for states to maintain "a range of facilities." The court recognized that the ADA does not necessarily require a state to serve everyone in the community, but those decisions regarding services and where they are to be provided must be made based on whether community placement is appropriate for a particular individual in addition to whether such placement would fundamentally alter the state's programs and services.