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

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.

ACTION ALERT: Make Sure Your State Isn’t Restricting Housing Options

Public comments on your Statewide Transition Plan needed!


Does this affect me?

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.

Background – History of HCBS Waivers

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.

What is changing about HCBS waivers?

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.

What can I do to help my state and ensure policy does not limit support options?

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.

What is a Statewide Transition Plan (STP)?

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!

What should I look for when assessing and providing comment on the Statewide Transition Plan?

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:

  • Does the STP include many opportunities for feedback throughout the five-year process from a variety of stakeholders, including individuals with disabilities and their families from an array of settings choices? Share your willingness to be part of any stakeholder committees.
  • Will your state publically post stakeholders comments, their summary of public comments and final draft of the STP that will be sent to CMS? Doing so will ensure transparency and accountability to stakeholders.
  • Are assessment tools going to be reviewed by stakeholders before being implemented? The STP and all surveys developed should focus on a “quality of life” analysis rather than on narrow characteristics such as size, geographic locations or other physical characteristics.
  • Is criteria described in outcome-oriented terms? Criteria that is not based on individuals experience, and therefore not following the intent of the new CMS regulations, must not be included as it may limit options. For example, statements such as “Only 4 HCBS recipients can be served in a setting,” “Residential settings can not provide employment or day programming,” and “Settings are limited to …” are not based on quality of life of waiver recipients. A setting should not be evaluated on its own without examining the individuals being served and their person-centered plans.  “Appropriate” means different things to different individuals and the settings must be evaluated through that lens.
  • STP should examine the merits and compliance of each setting on its own without lumping any settings into a generic category. For example, states can not assume “all” congregate settings, farmsteads, gated communities, disability-specific housing or clustered group settings are the same and, therefore, automatically non-HCBS settings.
  • Is educating the public about the importance of the Person-Centered Plan (PCP) and facilitation requirements listed as a priority in your states STP? The PCP is crucial for the future as it will ensure recipients are receiving individualized supports and life opportunities and are being supported in a home and community of their 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

What else can I do besides submit public comment?

  1. Attend a public forum on your STP in order for state leaders to hear directly from waiver recipients, their families, and providers.
  2. Tell us your concerns during your advocacy efforts as we can offer these instances as examples to federal leaders. For example:
    1. Do you feel as if your state leaders are listening to your public comment?
    2. What have your state leaders stated about being unable to meet your requests?
    3. Did the state widely disseminate information about the new regulations and public comment periods?
    4. Is information in plain language that self-advocates with intellectual disabilities can understand and therefore facilitate their input?
    5. Was your public forum well-attended by a diverse population with various perspectives?
    6. Share your public comment with others in the CCC as an example.
  1. Join the CCC to stay updated and receive more action alerts.
  2. Pass this information and CCC along to your friends, families, organizations and other organizations.
  3. LIKE, follow, and share news on our CCC Facebook page.

Where Can I Find More Information?

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:


Official CMS HCBS Webpage: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Home-and-Community-Based-Services/Home-and-Community-Based-Services.html

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)


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!

House Passes the ABLE Act: Take Three Minutes to Get It Through the Senate!

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!