Homes for Life Intentional Community Feasibility Report: Addressing Public Concerns

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:

 

5 Things You Need to Know About Disability Housing and Advocacy

i Oct 4th No Comments by

Advocates at the HCBS panel

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:

Housing Needs Graph

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

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.

Outline of Sweetwater Spectrum


A man reads at Sweetwater Spectrum


Sweetwater Spectrum

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:

  • “You are trying to create modern day institutions.”
  • “People have a choice, but they can’t use HCBS funding.”
  • “They don’t know any better – if given another option, they wouldn’t live in a segregated setting.”
  • “Intentional communities are just neo-institutions.”
  • “The Olmstead decision and the ADA mandates integration.”
  • “You are throwing away years of progress from our advocacy.

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

The Autism Housing Network: Turning Parents into Project Starters

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.

Screen Shot 2016-04-20 at 11.57.17 AM

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:

Screen Shot 2016-04-18 at 4.09.32 PM

Home and Community: An Individual Choice, Not An Ideological Debate

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

Update on CMS Expectations for State Transition Plans

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:

  • A state may presume that an individual’s private home or relative’s home where the individual resides meets the home and community-based settings requirements.
  • However, it is still the state’s responsibility to ensure that individuals living in a private home or a relative’s home have opportunities for full access to the greater community.
  • If the state presumes that private homes meet the settings requirements, the state needs to confirm that the homes were not purchased or established in a manner that isolates the individual from the community of individuals not receiving Medicaid-funded home and community-based services. For example, did a group of families purchase an isolated property solely for their family members with disabilities using waiver services?

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.

  • CMS expects states to submit an amended STP with their systemic assessment results [regulations, licensing requirements, survey assessment results, etc.] no later than March 31, 2016. This includes posting the amended STP for public comment and including the states’ responses to that public comment.
  • CMS expects states to complete their site-specific assessments no later than July 31, 2016. States are required to post these results for public comment and submit results to CMS no later than Sept. 30, 2016.
  • CMS differentiated a “modified” STP from an “amended” STP. A Modified STP is one that includes additional data in support of or expanding on existing content in the STP without making any substantive changes. An Amended STP is one that includes determinations from systemic and site-specific assessments, includes remedial actions or changes to milestones, or contains changes substantive enough to warrant public comment.
  • Desiree asked what should be the possible state responses if public comment disagrees with the state list of non-compliant settings. CMS responded that it will depend on the nature of the comments, the evidence presented in support of the comments, and the weight of the comments.
  • Mark asked if a person living in a setting believes the setting fulfills the requirements of HCBS, but the state reviewer makes a contrary assessment, whose view will prevail? CMS responded that a person’s individual choice will not overrule whether the state determines that a setting has the qualities of an institution or whether it meets the HCBS settings requirements.

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!

CCC Leaders Quoted in Article of National Importance

i Jun 22nd No Comments by

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.

 

 

Speaker of the House and 13 Ohio Members of Congress Support Farmsteads!

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.

Emily family

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/

When Mom’s Plans Aren’t Enough: Pam Finds “Home” in a Caring Community

Pam’s mother promised that Pam would be able to stay in her family home and continue her existing lifestyle even when her mother was no longer around. Upon her mother’s death, Pam was fortunate to have siblings that were prepared to interview, hire, and manage the direct support staff Pam needed. The goal for Pam was for her to live as independently as possible in her family home with her beloved dog, “Rachel”.

Unfortunately, things did not go as Pam’s mother may have wanted. Although Pam was able to stay in her family home with 24/7 support staff, something was missing. The staff cared for Pam physically, however her greater potential was not being realized within the daily monotony of television programming and routine meals.

In facing the difficult decision as to whether or not to go against her mother’s wishes, Jan explored alternative living situations for her sister. She discovered Live Oak Living, an intentional community where 16 residents with traumatic brain injuries or developmental disabilities live. When Pam expressed anxiety towards her life ahead at Live Oak, the community made special accommodations to ease her transition including constructing a fenced in yard for “Rachel”. Pam moved into her own studio to start her new life in a community that embraces individual choice and is encultured with person-centered support. Now, Pam can stroll over to a friends house, attend classes if she desires, or simply go for a walk with “Rachel” to visit her new equine friends. Pam described a shopping trip with her sister, and though she missed going to see Captain America, she returned just in time for “Girls Night” that evening!

After the interview, one of the staff members suggested that Pam put in an application to work at the bakery down the street. In noting Pam’s initial reluctance, the staff reminded her of her delicious cheese pimento, which was just enough moral support to help Pam consider a new employment possibility.

Are You Developing Housing or Employment Programs serving Individuals with I/DD? This Event is for You!

If you are planning, developing, managing social enterprises or a residential community for those with developmental disabilities, you may want to attend the next Brookwood Community Network Days Conference, February 11-13, just outside of Houston, TX!  It is a three-day immersion into the day-by-day operations with in-depth seminars led by staff who “provide an educational environment that creates meaningful jobs, builds a sense of belonging, and demands dignity and respect for adults with disabilities.” Learn how one mother’s school, started in a room at a church, transformed into the Brookwood Community, a faith-based, intentionally neurodiverse community on a beautiful 400-acre campus just outside Houston, TX. Brookwood employs over 180 individuals  with intellectual and developmental disabilities (I/DD) in social enterprises  and provides a home and community to 100 of these ‘citizens.’ Thousands of customers visit their restaurant and browse their store, and volunteers get the opportunity to share the communities amenities while supporting those with I/DD.  Having been there several times myself, I can say – it’s a whole ‘lotta family fun!

Here are some highlights from March 2014 Network Days:

As we worked side-by-side with citizens in horticulture and crafts, the Brookwood staff divulged their secrets to planting over 45,000 poinsettias in just 4 days and creating 33,000 pieces of art every month. Their best advice to create income-generating social enterprise opportunities is to find a proven professional in the field to assist in identifying and developing one or two original, high-quality, in demand products. Afterwards, determine the product’s appeal by selling it at local venues. Start somewhere and embrace the journey – even if you are simply creating ornaments from self-dry clay, cookie cutters, or bunches of herbs.

The Brookwood Community and its staff shared volumes regarding best practices in social enterprise. Interspersed with time for networking, Brookwood staff led nine seminars such as ARM Your Mission: Attracting, Retaining and Motivating Staff, Admissions: A Process and Pathway to Hope, and my favorite, How to Raise $1M with 3% Expenses. Vivian Shudde, Executive Director and daughter of Brookwood’s founder, imparted her wisdom as well, “If you have the right leadership, money will follow.”

Not only did we get to see Brookwood citizens at work, they invited us into their homes for dinner, and we had a rousing basketball tournament together that night! Michelle offers her insights on the Brookwood living experience in the video below.

The energy from everyone gathered, learning, and growing together was palpable. The event can be summed up in the words of  Joe Mazzu, Brookwood’s Director of Development, “We are making history together!” 

 

Schedule and Registration  To view their conference held in November visit www.brookwoodcommunity.org. Online Registration for our February Conference will open Friday, January 9 or you can register early by emailing or faxing the registration form back to my attention.  Space is limited to 75 people so register early.

Conference Contact: Jana Mullins,  281-375-2260

 

Desi’s Desk: Vacation with a Cause | Erik’s Ranch & Retreats

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.

  • Erik’s Equestrian Encounter takes city folk out to a small farm where Erik demonstrates the elements of horsemanship as an assistant narrates. (Check out Erik riding here: http://vimeo.com/64736523)
  • Following an interest in her family heritage, Mariah can take you on a one-of-a-kind Irish tour around St. Paul to see the cathedral and learn some Irish phrases at O’Gara Pub, complete with a whiskey tasting and live performance featuring herself and an Irish musician.
  • Who better to lead an architecture, art, and history tour than TJ with his impeccable memory and passion for the arts?

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!


Desiree Kameka

Desi’s Desk is a blog post written periodically by Desiree Kameka, Director of Community Education & Advocacy at Madison House Autism Foundation

Desiree’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.

Study: 50% of Americans don’t recall the name of “that lady across the street”

By now, many of you have probably seen Brian Bethun’s article The End of Neighbors or coverage by The Today Show, TIME Magazine, or AOL that reported 50% of all Americans do not even know their neighbors’ names. Bethun illuminates the notion that we, as a society, need to foster more human connections.

It is no surprise to those of us in the disability advocacy community that neighborhoods today are not cultivating community relationships let alone integrating those who have intellectual or developmental disabilities (I/DD). For years, organizations, like those in the Coalition for Community Choice (CCC), have been working to convince policymakers that being part of a meaningful community must extend further than simply being located in a neurotypical residential neighborhood.

People with I/DD who are living in their family homes or group homes often have little social capital because they lack employment options, transportation, and opportunities to develop real unpaid friendships with their neighbors. I may have a conversation with the gentleman who bags my groceries every week, but I don’t feel it’s appropriate to invite him to my apartment for dinner as he takes my groceries to the car. We first need to build a relationship … but how?

Grass roots efforts across the nation are trying to create public-private partnerships and develop “intentional communities” that would offer urgently needed housing options to people with and without disabilities. By fostering integration and relational community, these spaces may include planned recreational opportunities, social enterprise employment options, and community amenities that would benefit the local area. Counties, faith communities, and local non-profits have stepped in to support these efforts financially. Designed and informed by local individuals with I/DD, these community projects relieve states of a financial burden. While discrimination and NIMBY (Not In My Back Yard) are struggles facing these supportive housing opportunities, government policy creates barriers, as well.

Susan Pinker, author of the Village Effect, says that “face-to-face contact matters: tight bonds of friendship and love heal us, help children learn, extend our lives and make us happy.”  The CoHousing movement, Fellowship for Intentional Communities, Agrihoods, and other “Live-Work-Play” planned communities are emerging for neurotypicals who are fighting against the effects of isolation. Intentionally neurodiverse communities aim to foster supportive environments that value and nurture relationships.  You will undoubtedly learn your neighbors’ names in these friendly neighborhoods.

The stigma of “congregate settings” for those with disabilities stems from a troubling history, but we shouldn’t be creating barriers to affordable housing solutions that offer access to recreation, employment, and real relationships for people with and without disabilities. What constitutes as “home and community” shouldn’t be defined by policymakers, but by people with I/DD who have the right to live in a home and community of their choice.

If you would like to  connect with others and be an advocate for increased supportive housing choices in your state, Take action now and make sure your state ensures people with I/DD will have a broad range of housing options for the future!

Voices Uniting: Coalition for Community Choice

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.