If you or a loved one has an intellectual/developmental disability (I/DD) and/or autism, it is imperative that you consider the following five realities that impact the future of available support services and housing.
1. Without access to affordable housing, people are forced into “the next empty bed” or a more restrictive setting than necessary.
Most people who have public funding for support services use a Home and Community-Based Services (HCBS) waiver. HCBS waivers “waive” the need for institutional care to access supports and services in their homes and communities. This funding can be used for direct support staff and services but cannot be used for rent, food, clothing, going to the movies, eating out with friends, etc. The majority of adults with I/DD do not have a full-time jobs and rely on SSI (max. $733 a month) or SSDI (dependent on how much their parents earn, avg. $832). Some argue that this is why we need to focus on competitive, integrated employment of persons with I/DD – so that people can afford to live independently. However, according to the National Low Income Housing Coalition, a renter earning the federal minimum wage of $7.25 per hour would need to work 90 hours per week to afford a one-bedroom rental home at the Fair Market Rent.
Accessibility is also a huge barrier in securing affordable housing. Even if a person is able to secure a waiver without accessible, affordable housing, they may still end up in the “next empty bed,” which may be a group home, a foster/host home placement, a nursing facility, a psychiatric ward, or, as a recent Welsh study suggests, the streets. To ensure your loved one will not be forced into “the next empty bed,” consider beginning to save for his or her future housing costs. ABLE accounts are tax-sheltered 529 savings accounts that can be opened online with just $25.Want to learn more about housing affordability in your state? Check out the latest Out of Reach Report.
2. Funding for support services for adults with autism and other I/DD is not keeping up with the demand.
States are hoping that families will continue to support their loved ones with disabilities until they no longer can, but delaying assistance until a crisis or death occurs should not be the only option. Parents are often forced to leave the workforce, and adults with I/DD are not given opportunities to grow by leaving the nest. In the best situations, adults with I/DD are content at home but become increasingly dependent on an aging family caregiver; in the worst situations, they are stuck in an abusive and isolated home as states assume that living with one’s family is the best option for everyone. States may even offer financial support to keep an adult with I/DD in his family home. It is essential that people have access to public funding for the supports and services they require to live in a setting outside of the family home. The graphic below shows the enormous need for housing alongside the actual growth of residential support:
Check out your State Profile from the State of the States in Developmental Disabilities, a study that has tracked data for more than 35 years. To find residential trends in your state click here.
3. If you are lucky enough to have a waiver, be careful when considering a move out of state. Most states have long waiting lists, and you will be placed at the bottom.
It doesn’t matter if you are a military family, if your mom got a great promotion in another state, or if you fell in love with a girl across the state line – when you move, your supports do not follow you to the new state. Some states may say they do not have a waitlist, but this is not entirely true. States may not have a waitlist to get any type of support (e.g., some respite). However, every state has an undocumented waitlist for full residential supports that would allow someone with I/DD to move out of their family home. In rare cases, and usually with a hard fight, you may be able to use your state’s funding to live in a specific setting in a different state if you can prove that your state cannot provide the needed supports.
4. Families want to create more housing options but are running into barriers.
Across the country, many individuals with I/DD and their families are exploring different housing and support options in their local communities. They quickly realize that the existing options don’t align with their standards. Individuals with I/DD want to live independently with supports and housing based on their person-centered plans. They see the fluctuations in the housing market, both in rent and quality, and do not want to wait for housing vouchers that may limit their future choices if they get a job or want to move to a different county. Most importantly, they hear the stories of people with I/DD who live in their own apartments facing abuse, theft, bullying, and isolation. In response, many local communities are developing intentional communities that are built around the support needs, desired amenities, and friendships of residents with I/DD. Families are building the desperately needed housing and natural support systems that many people with I/DD desire.
Policy trends from 30 years ago, when our country rightfully began deinstitutionalizing people, now unintentionally create barriers to innovative supportive housing options. Local housing projects run into old zoning regulations that restrict people with disabilities from living in adjacent homes because, in the past, institutions purchased strings of houses and ran things as they did in the institutional settings. Now, federal Medicaid officials who hold the purse strings to waiver funding are using “guidance” to states as a way to enforce their preferences not recorded as official regulations. This “guidance” enables CMS to limit individuals from accessing waiver funding even in cases where an individual owns his home in a private neighborhood and manages his own staff using a self-directed waiver.
At the 2016 National HCBS Conference and in “guidance to states on settings that isolate” CMS defined what settings it considers isolating: disability-specific gated communities, farmsteads, residential schools, settings where people can live-work-play on the same property, campus-like settings, and intentional communities. CMS recently provided guidance on “planned construction,” revealing their bias against the development of these settings and stating that it will not give pre-approval to emerging housing communities unless they are fully operational. This process limits housing options to wealthy families who can afford to private pay up-front. It also halts the development of emerging housing communities that rely on financing because most lenders will not risk lending money to a neighborhood development that might be restricted from the potential residents they aim to serve. The state and federal government are using non-regulatory enforcement to restrict the use of one’s essential life supports and, in turn, limit housing options for individuals with I/DD. To learn more about HCBS waiver policy influencing housing choices, visit the Coalition for Community Choice website.
The Coalition for Community Choice Table at the HCBS Conference pose for the camera
The Coalition for Community Choice Table at the HCBS Conference
5. Government officials do not hear from everyday families nor recipients of publicly funded supports services with I/DD, and this impacts future housing and support choices.
Who is talking to CMS or other policymakers as they develop regulations? The most prominent voices today are paid, professional advocates in the DC-metro area. These paid advocates schedule meetings, create statements, attend government events and hearings, and sit on various task forces made up of others in the same circles. While their policy recommendations may make sense from an ideological standpoint, these ideas are often unrealistic in implementation and lacks generalizability when considering the diverse needs and preferences of individuals who utilize waivers. For example, CMS regulations on HCBS waivers requires waiver recipients to come and go from their house at any time. This is an important right for many people, but implementation of this regulation without additional funding for the wide array of waiver recipients makes the regulation simply words on paper.
Let me illustrate: For an autistic adult who can not identify the difference between his front yard and the street, leaving the house without support staff is unsafe and may put that person at risk of being hit by a car. Reimbursement of support staff may allow for only one staff person to support three individuals living in the house. Following CMS regulations, if the staff member is required to accompany one of the housemates on a walk, the two remaining housemates would be left unsupervised at home. If these housemates lived in a pedestrian-oriented gated-community, they could all walk freely in their neighborhood as cars are intentionally restricted. Unfortunately, a neighborhood of this design would be considered isolating by CMS’s standard.
Above: Sweetwater Spectrum, a private planned community of 4 homes for 16 autistic adults that was singled out by CMS in a letter to California Medicaid authority as an example of a private setting developed to isolate individuals with disabilities. One of the residents presented with other self-advocates at the 2016 HCBS Conference to tell policymakers her home is not isolating, but innovative.
There are three federally-funded programs that have representations in each of the states and are intended to reflect the voices of people with I/DD on the ground: Developmental Disability (DD) Councils, Protection & Advocacy (P&A) Agencies, and University Centers for Excellence on Developmental Disabilities (UCEDD). Have you heard of any of these? Most individuals and families MHAF has helped are unaware as to who these entities are, how to contact them, or what they do. Yet DD Councils and P&A are given over $110 million dollars every year to represent your voice – are they?
In some states, these entities and other advocacy organizations fight against proposed housing communities. Grassroots projects are being told:
As the project lead of the Autism Housing Network, I encounter these ideological barriers all of the time from people who have never even visited the communities that they vilify. I recently teamed up with other organizations in the Coalition for Community Choice to bring six self-advocates who live in intentional communities in California, Texas, North Carolina, and Florida to the 2016 National HCBS Conference. These self-advocates shared their stories and described why their choice of living on a farmstead, neurodiverse cohousing community, or other intentional community should be preserved. Check out their presentation below:
Policymakers must listen to the voices of self-advocates and their families who are experiencing the lack of opportunities, but you must speak up! Your voice is needed now more than ever as all states are in the process of creating new regulations and assessing settings in response to the HCBS Final Rule released by CMS in January 2014. Send this article to your elected officials with some of the challenges and fears you face everyday. You must make them aware of the challenges of housing choices of all individuals with I/DD. Encourage them to create incentives for the development of local public-private partnerships to create a positive future, not create barriers to local development.
Working together, the futures of five million adults with I/DD can be brighter.
Desiree Kameka hosts a livestream on the Madison House Autism Foundation Facebook Page (Friday, September 30th – 3:30-4:00PM EST). Topic: Housing and Advocacy
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.