PDF VERSION, click here: Official CCC Statement on the Anniversary of the ADA
On July 26, 2015 we honor the 25th anniversary of the Americans with Disabilities Act (ADA), one of the most important pieces of legislation ever created by Congress. Everyone knows someone who is protected under the ADA: a cousin with autism, a neighbor who uses a service dog, or a veteran injured in Iraq. The ADA changed the lives of millions of Americans by increasing options and decreasing barriers for them to fully participate in their communities.
As Americans we take for granted that we have the right to choose where we want to live, determine what we consider a home, and define community in our own terms. This has not been true for persons with intellectual or developmental disabilities (I/DD). Fifty years ago, supports services could not be accessed easily in communities and institutionalization was the most likely option for someone with I/DD.
One of the most significant tests of the ADA occurred 16 years ago in Olmstead v. L.C. in which the U.S. Supreme Court found that two women in an institution in Georgia had been denied their right to supports in a residential setting in the community. The Court ruled that, under Title II of the ADA, states cannot discriminate against individuals with disabilities and withhold access to community-based services for persons with disabilities.
In almost two decades since Olmstead, self-advocates, parents, legislators and others have worked together to change regulations, laws and develop new ways of thinking about support services so individuals with disabilities can have more choices and control of their lives. Coalition for Community Choice is a national collaboration of more than 125 organizations, businesses, housing developers, providers and advocates who want to increase options and decrease barriers to housing and employment choices.
Today, individuals with I/DD may have the option to live alone or with roommates in their own home or apartment, in a group home, in an adult foster care home, on a farmstead or ranch, or on a supportive living campus setting, all with supports they need to be able to interact with the greater community to the fullest extent possible. But four years from now this may not be true.
Recent changes in federal and state regulations may limit what constitutes an integrated residential setting. The Centers for Medicare and Medicaid Services (CMS) issued new requirements about housing and employment settings that states have five years to implement through State Transition Plans. For a person with I/DD, these changes may have the unintended consequences of reducing the options available and increasing barriers to that individual’s right to choose his or her preferred setting.
Affordable, supportive housing will be one of the most acute areas to be addressed in the next 25 years of the ADA, and it may prove to be a frustratingly elusive target. A snapshot of the statistics sizes the challenge. According to the 2013 State of the States in Developmental Disabilities report:
● There are 4.9 million adults with I/DD in the U.S.
● Of the 4.9 million, 3.5 million live with family caregivers, and 853,000 of these family caregivers
are 60 years of age or older and may soon need their own caregivers
● 77 percent of the 3.5 million receive no residential supports
● Only 244,195 additional residential placements were funded from 1994-2011
Rather than mitigate the housing crisis, in the 25 years since the ADA and 16 years following the Olmstead decision, the number of adults with I/DD on a waiting list for, but not receiving, residential services has increased more than 66 percent.
CCC and its member organization are working together to educate and advocate for persons with I/DD, families, legislators and advocates in five major areas:
As the first 25 years of the ADA has shown, person-centered policy and collaborative advocacy can open doors to choices and opportunities. We call upon all stakeholders at state and federal levels to continue to put the rights of individuals with I/DD first in the next 25 years of the ADA.
Desiree Kameka: Director of Community Education & Advocacy; National Coordinator, Coalition for Community Choice; Project Lead of the Autism Housing Network, Madison House Autism Foundation (www.madisonhouseautism.org); firstname.lastname@example.org
Mark L. Olson: President & CEO of LTO Ventures (www.ltoventures.org); Communications Director, Coalition of Community Choice; email@example.com
The Atlantic recently published an article, ‘Who Decides Where Autistic Adults Live?’ that highlighted the moral dilemma of how policy can create barriers to the human right to be supported in one’s choice of home and community. The author, Amy Lutz, interviews many individuals with different perspectives and opinions. Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disabilities Services, stands firm in promoting the setting one resides in directly influences one’s experience of isolation, abuse, and segregation. The following leaders of the Coalition for Community Choice were also contacted and quoted in the article:
“Even when living in their own apartments, people can be dehumanized through words or actions and involuntarily segregated by support staff. Physical locations don’t do this, people do.” -Desiree Kameka, Madison House Autism Foundation (National)
“If staff would call out or not show up, you either had overworked, exhausted aides who had to stay, or substitutes sent over by the agency who knew nothing about him or how to handle his self-injury. At Lakeside, he knows everybody. There are so many eyes on him. And if there’s a crisis, there’s always other staff around who can very quickly come help.” -Lisa Parles, Parles-Rekem LLP (NJ)
“My homes [donated homes to be used as group homes] are in nice neighborhoods—do you think the neighbors are asking the residents over for barbecues or to go to the movies? Of course not. There has been no real interaction between the neighbors and the people living in the homes besides the occasional wave.” -Micki Edelsohn, Homes for Life Foundation (DE)[After discussing how his daughter struggled in her own home with supports] “We learned that the human community is all that matters, not the physical community.” -Denny Rogers, Safe Haven Farms (OH)
“Some of the most wealthy towns in New Jersey want to donate land or use their trust funds to build affordable, supported housing and suddenly DDD [the Division of Developmental Disabilities] has changed the name of the game, telling us that residents may not be able to use their waivers… The Rockefeller Group wants to donate the land right across the street from Farleigh Dickinson University and next to the headquarters of the New York Jets. It’s close to public transportation, employment opportunities, shopping. They want us to build 40 units… But if the proposed changes go through we’ll only be able to build four.” -Tom Toronto, Bergen County United Way (NJ) [350 units of affordable, accessible, supportive housing is now on hold because of NJ changing policy]
“Some of them [future residents to the 100 unit planned community] are coming from traditional supported living, where they live in apartments with some assistance, but they are so, so lonely. What they want is a welcoming community. The Village is the best of both worlds: Residents can work, play, and worship in Jacksonville, but come home and hang out with peers in a safe environment.” -Jim Whittaker, The Arc Village (FL)
The Coalition for Community Choice has come together in a united voice to ensure that policy preserves the human rights of individuals with disabilities to be supported in a home and community of their choice. Every individual with I/DD has unique interests, life goals, and support needs; thus, an array of supportive home and community setting options should be available and continually assessed based on the quality of life of those who chose that setting as home. Thank you to those Coalition for Community Choice who contributed to this important article.
In January 2014, Coalition for Community Choice came together and continues to grow as a unified voice for increasing options and decreasing barriers to housing choices.
Several years ago, the Centers for Medicare & Medicaid Services (CMS) released a proposed rule change that included changes that defined what settings people with disabilities could use for their Home & Community-Based Service (HCBS) waivers, a funding resource that offers people the chance for greater choice of their desired service providers. Ironically, the proposed policy actually restricted options, and the responses to these changes were overwhelming (See LTO Venture’s Choice v Olmstead for a great commentary).
These changes provoked another round of modifications and release for public comment, which, despite previous feedback, continued to include restrictive definitions of “home and community”. The final version was released in January 2014, since then the CCC has written a policy brief, FAQ, and other materials to explain what these changes may mean for current housing options and the future development of innovative housing for people with disabilities. With almost one million people with intellectual and developmental disabilities still living with caregivers over the age of 60, policy should not be creating any barriers to new affordable housing options.
In light of these staggering figures, the Coalition for Community Choice is committed to bringing together like-minded people and organizations in an effort to explore strategies to ensure that people with disabilities, not policymakers, have the right to define their own home and community. People, who have found their sense of belonging and purpose in intentional communities, who live and work in farm communities, who are planning to move into an apartment building with “smart home” technology and design strategies for their unique needs, or who choose to live in neighboring homes with their peers on the same cul-de-sac, have the right to live in a home and community of their choice.
If you believe people with disabilities should have the broadest range of affordable and accessible housing options, please contact the CCC National Coordinator, Desiree Kameka at DKameka@MadisonHouseAutism.org to add your name and/or organization to the growing list of CCC supporters and stay connected for future advocacy alerts.