Why This Topic is Important
For most of the last century, 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 we support people with developmental disabilities 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 with the position of The Arc on the inclusion of children.14
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 there are some areas that contend there will always be a need for relatively traditional institutions, the trend is clear – in the 21st Century, the institution, the asylum, the developmental center, and the state school will become memories.
The fight for supporting families and closing institutions is far from over. We must remain vigilant.
We must also turn our attention to the real challenges confronting people with developmental disabilities, their families, friends, and allies. Full inclusion for 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 has important impact on inclusion and belonging. Certainly, the nature of our homes has a lot to do with how other people see us. People who are seen as deserving a homelike environment are not as valued as those who are seen as worthy of owning their own homes. People who live in residences, group homes or other kinds of segregated programs are not as valued as people who have a home to go to. People who are not allowed to choose the people with whom they live, or when they eat, or what they eat, or where they live, do not have control of 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 a 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. And 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 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 possible and real.
Together, we can create opportunities that are better than we can imagine. We can continue to make the unimaginable happen.
14Adopted by The Arc Delegate Body, Oct. 1995.
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 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 should want, how they should live, what narrow range of choices they should have. 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 policy, practice and funding 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 20 years has there been a sustained movement to assist families to meet some of the additional demands that 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. Often 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 it was go it alone or place their children in institutions. When families simply did not have the resources to meet their child's needs and continue to function as a cohesive family, the choices narrowed.
Parents who decided to ignore professional opinion and fight to raise their children at home will tell you how they had to continually justify this decision to others. Our culture simply did not see children with developmental disabilities as children. After all, "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. The expectation was that "they" would not develop.
As the efforts of advocacy organizations and the decisions of court cases began to dismantle the institutional model, it became clear that it is possible to support people with significant disabilities to live in the community. As services became available to support adults in the community, the irony that families were not supported to stay together became clearer.
Policymakers were called on to provide some form of community services and supports to help "alleviate the stress of raising a child with a disability." We began to see the growth of respite programs and parent counseling aimed at "assisting parents come to terms with their child's disability." There were calls for investing public money in supporting the family rather than replacing it.
Advocates pointed out that most states operated two distinct systems of child welfare. One system was for "typical" children. It emphasized the importance of strengthening and maintaining the family home. It believed in the right of children to grow, develop, and be nurtured in the natural family environment. The other system – the Mental Retardation/Developmental Disability system – generally denied the importance of home life and failed to recognize any rights for the child. When the fight for a free and appropriate public education was won, the door was open 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 patterns. 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 which affect 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 challenges faced by each family. When the community, including public, private, formal, and informal resources, joins with families of children with disabilities to mobilize resources and build connections, half the battle is won.
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:
- Some areas still admit children to institutions.
- There is no clear consensus that group care settings, such as nursing homes and group homes, are totally inappropriate for children.
- Family support still receives 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 either in the core of legislation or budgets.
There are a number of barriers that 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.
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 one chooses increases community participation.
- Freedom – Privacy is more easily assured; rules are set by the people in the home.
- Respect – Home ownership is part of the American Dream!
- Responsibility – Managing a home and household activities is equated withbeing 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. Home owners 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 other adults, adults with developmental disabilities want a piece of the American dream. They want a home of their own. Home – your space, where you are 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. Getting your own place, moving out of your parents' place, setting up housekeeping – the signs that you are 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 leaving the family home either directly to their family member with a disability or in trust.
- 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 and getting a house together.
In every community across the nation, parents look forward to the day when their sons and daughters can settle into a stable and secure adult lifestyle. Unfortunately, the service systems in most communities cause parents to worry rather than feel secure.
Often, when a person needs assistance in daily life, the best that most systems can offer is a place on a waiting list for a group home bed. Often, the waiting lists are far too long. People only move off the list when there is a crisis. There is little hope that families will be able to arrange a smooth transition into adult life for their children. Often, their adult children with disabilities continue to live with them until they die or become incapacitated.
Fear, anxiety, panic prevail. Time is running out – what happens after we're gone? Many become so desperate for some sense of security they will grab at anything that looks like an answer. Decisions are more likely to be made based on what is 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 is easy to appreciate why any placement that is available now could be seen as better than the uncertainty of a future driven by crisis. So often the result is the 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, the majority of the professional literature and the popular media keep the myth alive that people with developmental disabilities require housing in something called "homelike environments." The institutional mind set is alive and well. On top of that, a huge industry has developed to provide residential services. The 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 agency provides support but does not control the housing. Then there are 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, there 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 fit. Our 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, several realizations begin to dawn:
- A continuum of services and the idea of least restrictive environment create the illusion that people need a range of more or less tightly managed settings. The real need is not restriction or limited options but services and supports which are geared to each person's needs and preferred living situation.
- Group living and homelike environments must be replaced with providing services and supports to individuals in their own homes.
- We must come to terms with a new relationship 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 people with disabilities. The term "client" is no longer a meaning-less euphemism which identifies individuals with disabilities as commodities traded on the human service market.
Our priorities must be redefined:
- 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 which identifies formal and informal resources, and develops multiple backup strategies.
- Understand that support is not a program that ends. It is a long term commitment.
Most service systems have not even begun to figure out how they can get out of the real estate business and convert resources to providing supports. However, there are a growing number of responsive organizations that provide truly individualized supports to adults with developmental disabilities, including individuals with very complex disabilities, in their own homes. The poverty which is 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 and 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 has certainly been 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 ADA. Their case went all the way to the Supreme Court. 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 that 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.
Images for the Future
- Families are fully supported to stay together. No family is forced to place family members with disabilities outside of the home because of lack of support. Families control the resources.
- Institutions are totally irrelevant to the lives of people with disabilities and the abilities of communities to support people to live in the community.
- Young people with disabilities grow up as members of families, neighborhoods, and friendship networks. They go to school with other kids from their neighborhoods, play with them, grow up with them.
- Young adults with disabilities have the chance to leave their parents' home and set up their own homes with whatever support is necessary. They have choices about the kind of house they live in, in which neighborhoods they live, with whom they live, and with what kinds of support. they have control over who is in their life.
- No person with a disability is forced to live in a residential setting because other options are not available. Changes in support arrangements do not force individuals to lose their home.
- Where and how people with disabilities live actually assists them to enter into relationships with other people – as neighbors, as friends, and as housemates.
- Communities figure out lots of different ways to help people who are poor, including people with disabilities, to own their own homes. Local, state and federal policy supports these efforts.
- People with disabilities have jobs that pay a decent wage. This helps them buy their own homes. Income support programs do not penalize people with disabilities who try to own their own homes.
- Local, state and federal policy is dedicated to assisting people to live in their own homes with support, rather than perpetuating an image of people with disabilities living in service settings.