Homes For Life Foundation‘s (HFL) mission is to address an urgent issue in Delaware: the affordable housing crisis for adults with intellectual/developmental disabilities (I/DDs). Over the past 25 years, the foundation, led by husband and wife team, Dr. Lanny and Micki Edelsohn, has raised millions of dollars to build and furnish dozens of homes and condos that house 104 Delawareans with I/DD. The foundation‘s latest project, an affordable, consumer-controlled intentional community in DE, aims to house 30 more individuals with I/DD.
Last year, the Ford Foundation awarded HFL a grant to write a feasibility report entitled “Building an Intentional Community in Delaware.” In the report, that was published in February 2017, the authors note:
“The [intentional community] intends to provide adults with I/DD their community of choice by providing an innovative, affordable, and supportive housing option that encourages independence, respects choice, supports a safe and healthy lifestyle, and promotes taking full advantage of employment, social, and educational opportunities in the broader community.” Click here to read the full feasibility report.
Since the report was published, some individuals have expressed concerns about the prospective community, accusing it of being “institutional.” Madison House Autism Foundation‘s National Director of Housing and National Coordinator of the Coalition of Community Choice (CCC), Desiree Kameka, is a tenacious advocate for housing choice and a contributing author of the HFL report.
Kameka recently wrote a letter to Darren Walker, President of the Ford Foundation, responding to concerns that the intentional community will limit the autonomy and choice of adults with I/DD. Kameka writes:
“The opposition to intentional communities and its attribution as a neo-institution is a gross overgeneralization without regard for the vast difference in service delivery models. Moreover, this biased ideology stems from those who have not built relationships with neurodiverse citizens who have chosen to live in intentional communities.” Click here to read Kameka’s full letter to the Ford Foundation.
Now, more than ever, it is important to embrace the array of housing options for adults with I/DDs. While one individual may feel uncomfortable living in an intentional community, this may be an ideal choice for another.
Madison House Autism Foundation (MHAF) is dedicated to creating spaces for adults with autism and other I/DDs to share their ideas regarding housing issues. Last year at the HCBS Conference, MHAF arranged and moderated a discussion with six self-advocates who live in intentional communities in California, Texas, North Carolina, and Florida. 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.
To learn more about their perspectives, watch the discussion below:
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
Madison House Autism Foundation is excited to unveil a project that has been in the works for over a year now: the new Autism Housing Network (AHN).
“The AHN is the first interactive online community for adults with special needs and their families,” says Desiree Kameka, national housing expert at MHAF. “It serves as a hub of housing ideas and resources to help project starters create new options for thousands of adults with autism and related disabilities across the nation.” JaLynn Prince, President of MHAF, explains “The AHN is an answer carefully planned and implemented with a delicate sensitivity for adults, young and old, on the autism spectrum.”
The AHN offers various features that can make navigating and understanding the housing landscape much easier. The AHN Housing Directory gives users the ability to explore emerging and existing housing models through an interactive map and a user-friendly catalog. There are a few things that make the AHN especially unique. If you create an account on the site, you can save your favorite housing ideas to your Favorites page to refer back to when you’re ready. You can also submit your own projects to be added to the directory and map for other users to see and share. See a screenshot of the interactive map below.
The AHN Resource Directory is a collection information, videos, presentations, and other media to educate parents, self-advocates, and project starters on the best practices in creating housing for adults with autism and related disabilities. Users can submit their favorite resources to share with others.
Do you have a specific question or comment about your housing project? The AHN Discussions Board is a great place to say whatever is on your mind. The AHN community would love to connect while helping you find the answers you need to make your project a success.
We welcome and invite you to join this exciting new community that is making housing a reality for adults with autism and other disabilities around the country. Visit www.autismhousingnetwork.org to sign up or click the button below:
Access to affordable and supportive housing is becoming increasingly challenging, and funding for waiver supports and housing vouchers is not meeting the demand. It is concerning that professional, non-state resident advocates are writing letters to Medicaid authorities in Arizona and Florida urging the state to restrict individuals with disabilities from accessing supports in targeted settings they deem not “Home & Community-Based” on the basis of physical characteristics. The preservation of places people are proud to call home and the development of supportive housing opportunities are essential in preventing the forced placement of individuals with intellectual and developmental disabilities (I/DD) in institutional or more restrictive settings.
Since these letters were sent, all of the properties targeted have confirmed they were neither contacted nor visited by the Autistic advocacy group located in Washington, DC. Only two of these housing options have residents who use waiver funding, and the others are either completely private pay or are under construction. This national advocacy group does not have a local chapter in Arizona and has just one chapter in Jacksonville, Florida – hours away from The Villages at Noah’s Landing. This calls into question the motivation behind non-state residents and paid advocates who speak on behalf of citizens they do not represent.
These letters are troubling for two reasons:
1. Unlike the perspective in the letters, text from the CMS Final Rule Settings Overview and Fact Sheet states below, federal policymakers do not rely on setting size or physical characteristics to determine if a setting is “home and community-based”:
“In this final rule, CMS is moving away from defining home and community-based settings by ‘what they are not,’ and toward defining them by the nature and quality of individuals’ experiences. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics. The changes related to clarification of home and community-based settings will maximize the opportunities for participants in HCBS programs to have access to the benefits of community living and to receive services in the most integrated setting and will effectuate the law’s intention for Medicaid HCBS to provide alternatives to services provided in institutions.”
Settings must be assessed based on the waiver recipients’ quality of life, lived experience, and opportunities for access to the community. Person-centered planning, transportation, liveable income, accessible and affordable housing, space to build neurodiverse relationships, and consistent support persons are imperative to meaningful integration. Physical characteristics do not determine whether these services and supports are in place.
2. The letters disregard the dignity of citizens with I/DD and autism who have have chosen to live in these communities and have the human right to be supported in a home, workplace, or community of their choice. Many state waiver recipients desire to have access to innovative supportive housing opportunities that will offer them more support choices, stable housing, and more control over their lives consistent with their person-centered planning goals.
The choices, values, and opinions of current and future residents are upheld by these supportive communities. For example, the first step in applying to live at The Villages at Noah’s Landing is to fill out the “Interest Survey.” Eighty-eight self-advocates have already completed this survey – 36% of whom have lived independently in the past. The top four priorities as ranked by survey participants with disabilities are as follows:
1. Personal Safety (98.67%)
2. Transportation (90.79%)
3. Recreation & Social Activities (92.00%)
4. Daytime Activities (88.00%)
These same participants provided the following comments:
“I really need help acting more grown up and getting a job and going to school and things i would like to move here very very very bad.”
“I drive and have a car, would like to work, am looking for people who understand me”
“I think this is the best situation for people with ASD. I would love to be able to be independent and also have the support i need”
“I’m 18 and I can’t get any type of money or anything from the government. I can’t find a job at all I can’t drive I’m in ese and I would really like to get a job and live there. I really need this it would be a good for me to become a chef if I can get help finding a job and living at Noah’s ark.”
“So impressed by this project. What i have imagined for my self . I feel that the fact it is a community that is not just a financial endevor but a project with heart I have looked at other things like sec 8 housing but you felt as though it is too unsafe and doesnt meet my needs. Assisted living i didnt feel fit because its financial and does not have my best interest at heart. Noah’s Ark has heart .”
“i hope you can build more than one site.”
“I would like to live with a roomate or two someone I can hangout with play games with watch wrestling do all kinds of stuff.”
“I am very excited about the future with Noah’s landing.”
An individual may prefer to live in an intentional community, a campus or ranch, to have a safety net when s/he can only find a job for eight hours a week; for on-site support when meltdowns happen or a question arises; to have neighbors nearby who would invite them over for dinner or impromptu movie night; or even the opportunity to wander in their community without being misunderstood.
Listen to the voices of those who are excited about living in a similiar supportive housing opportunity, The Arc Village, being developed in Jacksonville, FL: https://www.youtube.com/watch?v=8P3g9kSgaJ0.
In Arizona, almost 21,000 individuals with I/DD are living with a caregiver over the age of 60; in Florida the number is nearing 80,000. Fewer than 3,000 individuals in Florida and Arizona combined had access to the supports and accommodations necessary to move out of their family home in the past decade. In this time of urgent need, it is important to embrace existing and emerging supportive housing options in Florida, Arizona, and nationwide.
Paid advocates in Washington, DC should not diminish the voices of state waiver recipients or their families. States have full authority to determine whether settings are compliant, and the Coalition for Community Choice urges public officials to continue giving priority to the voices of local constituents on this important issue impacting thousands of individuals with disabilities.
If you would like more information about the HCBS Final Rule, statistics in your state, or to see and hear the voices of those with disabilities who believe their #ChoiceFirst should not be limited, visit the Coalition for Community Choice website at: www.CoalitionforCommunityChoice.org or review the CCC HCBS Final Rule Mini-Toolkit.
Learn more about the settings referred to in the letters by visiting their websites and maybe even plan a visit: The Villages at Noah’s Landing, Echoing Hope Ranch, Rusty’s Morningstar Ranch, First Place AZ, and Rainbow Acres
The CCC has created an STP Mini-toolkit as a quick reference guide after almost 2 years of HCBS Final Rule implementation. This information is an extension of that toolkit:
The Center for Medicare & Medicaid Services (CMS) and NORC, the contractor helping implement the Final Rule and review State Transition Plan’s, hold monthly webinars called SOTA (State Operations and Technical Assistance) calls to advise Medicaid directors about completing their STP. CCC participates in these calls and will continue to report on relevant issues. We have made a specific request to CMS to publish all the questions and answers from every call, and they have indicated they are working to address that concern. Below are CCC observations from the last two calls.
Nov. 4, 2015 – HCBS Settings, Excluded Settings, and Heightened Scrutiny Process [Download]
The content stayed consistent with the Final Rule and Guidance, but for the first time specifically addressed private homes as settings:
Dec. 9, 2015 – Systemic and Site-Specific Assessments and Remediation [Download]
The most significant aspects of CMS’ expectations about the STP process revealed in this webinar were “deadlines” when CMS expects certain milestones of the STPs to be completed by all states.
Please continue to educate your advocates about these issues using the CCC developed materials as their voices will be of utmost importance when public comment periods open in your state. Check the CCC website regularly to see if your state public comment period is open!
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.
Denny Roger’s daughter, Emily, was at a dead-end. Her family modified their home so she could have her own space, but her frequent meltdowns expressed her dissatisfaction and frustration. She moved into a home in the community with a roommate, but led a very isolated life. Sitting in front of the TV all day was not the life she craved. Her father, with the help of others facing similar circumstances, created Safe Haven Farms after much consultation and guidance from Bitterweet Farms, the first farmstead to serve autistic adults in the USA.
Emily spends her days caring for animals, tending to her pumpkin patch, interacting with roommates and friends or relaxing in an environment specifically designed to support the needs of autistic adults. Meltdowns are rare, and life is good at Safe Haven Farms. However, Denny, his daughter, and hundreds of thousands of individuals across the country now face another barrier.
Every state must create a State Transition Plan by March 17, 2014 and describe its compliance with the Final Rule. The Final Rule is CMS policy that establishes settings where individuals with disabilities can use their publicly funded long-term support services, generically called Home and Community-Based Service waivers (HCBS waivers).
Unfortunately, guidance from the Center for Medicaid & Medicare Services (CMS) has labeled farmsteads, like Safe Haven and Bittersweet, as “settings that tend to isolate” along with residential schools, gated/secured “communities” for people with disabilities, and multiple use campuses. Individuals who have chosen to live or work in these types of intentional home and communities with their peers face the reality that their state policymakers can take away their publicly funded support services. Private-pay intentional communities exist across the country, but are unaffordable for most individuals with disabilities.
Safe Haven Farms, Bittersweet Farms and other Ohio advocates have been tirelessly advocating for the past three months [see their documented efforts here]. Denny writes,
“I have never met so many politicians in my life and told our same story over and over! But I think it has really made a difference … I was truly impressed with how willing all of the politicians were to meet with us on short notice, hear our concerns, give us suggestions and reach out on our behalf. It restores a little of my faith in the political system! They were all super supportive.”
In direct response to their combined advocacy efforts, 14 Members of Congress representing Ohio sent a joint-letter to the Secretary of Health and Human Services, Susan Burwell stating their concerns about the CMS guidance. We applaud Ohio delegation that sent a letter to HHS. Madison House has sent a letter to express appreciation for addressing this important issue and our involvement with the Coalition for Community Choice. We ask you to consider doing the same.
You can send your note of appreciation directly to Speaker Boehner using this online form.
If you would like to learn more about how you can influence policymakers in your state, visit Take Action page of the Coalition for Community Choice website: http://coalitionforcommunitychoice.org/learn-more-about-the-issues/
Regulations regarding waiver services and supports in every state are in flux. In January 2014, the Center for Medicaid Services (CMS) issued new federal regulations intended to increase the quality of life for the elderly and those with disabilities who receive public funding through Home and Community Based Services (HCBS) waivers. Prior to these changes, HCBS requirements were based on location, geography, or physical characteristics. The new HCBS regulations are outcome-oriented and life supports are to be guided by an individual’s person-centered service plan (PCP). This is a huge step forward as these new federal regulations are intended to ensure more individualized supports based on the needs, choices, and experiences of individuals with disabilities.
Each state is now charged with revising and assessing its state policy and HCBS settings to make sure it complies with these new federal CMS regulations. This process will be documented in a Statewide Transition Plan (STP) that is to be influenced by your input.
The Coalition for Community Choice (CCC) is an alliance of over 85 organizations and businesses across the country that strive to meet the housing and employment demand for an array of life options for those with intellectual/developmental disabilities (I/DD). Many members of the CCC have developed innovative housing opportunities and social enterprises in their local communities to meet the desperate demand for meaningful work and access to more life experiences. Collegiate transitional programs, working ranches and agricultural communities, sensory-friendly and assistive technology equipped 1 and 2 bedroom apartments, neurodiverse live-work-play communities, and other types of intentional communities are emerging across the country!
As CCC member organizations advocated during public comment periods, many realized that state leaders were swaying from the intent of the CMS federal regulations and reverting back to regulation criteria that is not outcome-oriented or based on individual experiences. In response to these concerns regarding housing choices for thousands of individuals with disabilities, Coalition for Community Choice members came together and signed the following letter to CMS:
It is imperative that you also become an advocate and ensure your state does not create more restrictive policy than the federal CMS regulations that may limit housing and employment options. To learn more about how you can influence your Statewide Transition Plan (STP) visit the Act Now page of the Coalition for Community Choice website.
Working together, we can create a better future!
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Public comments on your Statewide Transition Plan needed!
If you are receiving waiver services, you may be affected. At a minimum, the settings in which you are supported will be subject to scrutiny to ensure compliance with new regulations.
Worst-case scenario could include:
(1) the closing of a housing, employment or day program
(2) a requirement that you find an alternative program and/or living situation
(3) being forced to find an alternative funding source for your program (other than Medicaid) and/or
(4) dramatic changes to the operations or programs in which you participate.
The U.S. government authorized the “Medicaid 1915(c) Home and Community-Based Services (HCBS) Waiver program” in 1981. Prior to this, beneficiaries could only receive comprehensive long-term care in institutional settings. This law allows states flexibility to offer different types of support services to individuals with disabilities in their own home or other settings in the community. States are in charge of creating different waivers to meet the needs of their citizens, the term ‘HCBS waiver’ is the broad term that encompasses all of the different waivers available in states.
In January 2014, the Center for Medicaid Services (CMS) issued new regulations defining HCBS settings, in other words, where waiver recipients can use their supports. Prior to these changes, HCBS setting requirements were based on location, geography, or physical characteristics. The new regulations define HCBS settings as outcome-oriented and guided by the consumer’s person-centered service plan (PCP). This is a huge step forward as policy is intended to ensure more individualized supports based on the needs, choices, and experiences of individuals with disabilities.
Every state is now charged with revising and assessing their state policy and HCBS settings to make sure they comply with these new federal CMS regulations. This is the opportunity to open the doors to more local housing solutions, BUT it can also create barriers! For more information about how these regulations can open or close doors in your state, see the CCC HCBS Policy Brief and its accompanying FAQ.
According to these new federal CMS regulations, your state has an obligation to seek and revise their policy based on public comment – that includes YOUR voice!
Your state MUST release a draft of their proposed Statewide Transition Plan (STP) for public comment for AT LEAST 30 days. Additionally, they MUST have another option of collecting public feedback which may include an in-person forum. Once they receive feedback, they are suppose to revise their STP based on public comment and submit it to CMS for approval.
The Statewide Transition Plan is the document describing how states will assess and remedy their compliance with the new HCBS regulation requirements, and then provide this written description to CMS. The state may also assess individual settings/types of settings to further document their compliance.
States have until March 17, 2015 to submit their STP to CMS and five years to complete implementation and become compliant with the new regulations.
Every state is sharing and asking for public comment on their STP draft at different times, and your states public comment may be open right now! Visit the HCBS Advocacy website for information about your state and check it regularly to make sure you do not miss your public comment period!
Though the federal regulations regarding HCBS services have already been finalized, stakeholders can provide input into both the process for implementing their state’s STP as well as ensuring that their state follows the guidelines and intent of the outcome-oriented federal regulations established by CMS.
Every state’s STP will be different, but here are some suggestions based on feedback from members of the Coalition for Community Choice:
Generally, you want to make sure your state is not adding further restrictions or regulations beyond the federal requirements for HCBS settings. See this CMS Fact Sheet to learn what the new federal HCBS regulations require: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Home-and-Community-Based-Services/Downloads/Requirements-for-Home-and-Community-Settings.pdf
CCC members can request examples of letters other members have submitted. Contact Desiree Kameka, CCC National Coordinator: DKameka@Madisonhouseautism.org
CMS Toolkit sent to states about the State Transition Plan: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Statewide-Transition-Plan-Toolkit-.pdf
HCBS Advocacy website with the list of state by state links and national resources:
Links to websites for state specific statistics on the need for more housing options:
Final CMS 2249-F/2296-F Regulations in Federal Register (Note: the first 70 pages is discussion in response to the rounds of national public comment periods over several years during the development of these new regulations)
As part of a nationwide movement to create local housing and employment solutions, the mother of a young man on the autism spectrum started Erik’s Ranch & Retreats. This past April, the Minnesota retreat opened its doors, and a second location, a Montana ranch, is in the process of fundraising to build a living and working ranch with the guest accommodations run by the adults with autism who live there. They have a $2.7 million capital campaign goal that will build 4 guest houses, two member residences that would provide independent living for up to 14 adults with autism, a visitor center, and a riding arena. Located just outside of Minneapolis and the Mall of America, Erik’s Retreat offers their bed & breakfast guests and local “voluntourists” transportation, breakfast delivered to their rooms, and specialty tours led by adults with autism. Erik’s Retreat employs these individuals while giving them an opportunity to showcase their strengths and abilities for a wage of $14/hr.
The inspiration for starting the retreat was Erik’s love of horses. Erik is a non-vocal, autistic adult who needs one-to-one assistance, but he is part of a growing team of five tour guides who lead visitors through various fun destinations such as the Commemorative Air Museum, the Walker Art Museum, University of Minnesota Stadium, and the Canterbury Racetrack.
‘Members’ at Erik’s Retreat are not molded to pre-existing jobs – instead, jobs are structured to suit individual interests and skill sets. This is not just another bed & breakfast – Erik’s Retreat in Edina, MN offers person-centered employment options, individualized life planning, planned recreational and social activities, and supportive housing arrangements for adults on the autism spectrum.
Deanette Smith, Director of Programs and mother of a 9-year-old on the spectrum, left her corporate job to join the Erik’s Retreat family after enjoying a tour. She participated in her first tour as part of a corporate team-building activity with TJ and Erik as guides. Deanette states, “It was team-building, fun, and clearly built [the guides’] confidence.” Though Deanette was particularly inspired given her experience as a mom, her colleague later told her that it was the best team-building event they ever had with off-site managers.
I had the pleasure of staying at the newly renovated Erik’s Retreat while visiting Minneapolis. The guest rooms are clean and comfortable, accommodating for even extended stays as each contains a kitchenette. Typically I can be a bit grumpy in the mornings, but when my personal concierge, Sam, brought breakfast to my room, it was almost as good of a welcome to my day as coffee – well, almost …
There is an overwhelming need for more local solutions like Erik’s Retreat. They currently have a waitlist of over 180 individuals seeking housing and are still trying to raise money to complete renovations in Minnesota, while also building guest accommodations in Montana.
Next time you are thinking of planning a trip to the Twin Cities, support their efforts and make a reservation to stay at Erik’s Retreat. Oh, and don’t forget to take a tour or two!
Desi’s Desk is a blog post written periodically by Desiree Kameka, Director of Community Education & Advocacy at Madison House Autism FoundationDesiree’s work focuses on researching housing issues, advocating for autistic adults and their issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network, which is currently in BETA testing. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects.
Achieving a Better Life Experience (ABLE) Act was just passed in the House by an overwhelming vote of 404-17! It must now pass through the Senate and could be voted on as early as next week.
The ABLE Act would allow for the creation of tax-sheltered savings accounts (similar to a 529 college savings account) for people with physical, intellectual, and developmental disabilities to save money without putting their federally funded public benefits in jeopardy.
Up to $100,000 can be saved for disability-related needs such as education; housing; transportation; employment support; health, prevention, and wellness costs; assistive technology and personal support services; and other expenses.
Many disability advocacy groups have worked very hard to get this Bill to the floor, and now they need YOUR help to get it through the Senate!
Please contact your Senators and tell them to support the ABLE Act!
Find your Senator’s contact info here: http://www.senate.gov/general/contact_information/senators_cfm.cfm
Please call, and share your support by using the following script:
“My name is [your name] from [your organization and/or coalition]. I’m calling to ask you to support the ABLE Act of 2014, H.R. 647 / S. 313, so that individuals with disabilities and their families can better financially prepare for the future and move towards economic self-sufficiency.”
End the call by thanking them for their leadership.
Working together, we CAN get the ABLE Act passed!
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.