Friday, March 16, 2018

Michigan Congressman requests changes to Medicaid rule that restricts choice in housing and services

Representative Tim Walberg from Michigan’s 7th Congressional district has added his voice to legislators requesting changes to the 2014 Home and Community-Based Settings rule to ensure choice in housing and services for people with developmental disabilities.

In a letter dated February 16, 2018 to Seema Verma, Administrator for the Centers for Medicare and Medicaid Services (CMS), Representative Tim Walberg expresses his concern for feedback he has received from constituents about the HCBS settings rule that restricts personal choice and exacerbates already limited housing options for people with disabilities: 

“…The Settings Rule…imposes certain unworkable standards on many HCBS settings. In particular, the ‘heightened scrutiny’ standard applied to homes and communities designed for individuals with disabilities, such as campus settings, farmstead communities, apartment buildings designed for individuals with disabilities, day programs, and other ‘intentional communities,’ presumes that these settings are not suitable for individuals receiving Medicaid HCBS.

“The St. Louis Center, a residential community in Chelsea, Michigan, is one of these ‘intentional communities,’ where nearly 50 of my constituents live and thrive as a result of the personalized care they receive from the Center’s kind and loving staff. Having visited the St. Louis Center many times over the past decade, I can testify to the exceptional services provided to the residents, the warm, caring environment of the campus, and the underlying support system fostered by the staff which encourages each individual to grow and reach his or her full potential.

“Community integration is a laudable goal and one I fully support. Unfortunately, settings like the St. Louis Center will not be able to meet CMS’s heightened scrutiny test. I have heard these concerns firsthand from the residents who believe the final rule will force them to move out of their homes. As Michigan already faces a lack of housing and vocational options for individuals with developmental disabilities, these individuals and their families are incredibly worried they will lose their community and the place they choose to call home.

“Each individual living with disabilities has their own needs and faces unique, personal challenges. As a result intentional communities may not be the best option for everyone with a intellectual disability, as nobody should be forced to reside in any setting that is not his or her choice. Unfortunately, as the Settings Rule and related policies are currently being implemented, too many of the the most vulnerable constituents in my district face the threat of losing the safe and healthy community they have chosen to live in.

“To ensure the HCBS final rule expands the quality options available to individuals with developmental disabilities, rather than restricts those options, I respectfully request that you consider amending the Settings Rule to clarify that individual choice is paramount in determining whether a setting meets the requirements; and eliminate the presumption in subparagraph 441.301(c)(5)(v) that settings designed for individuals with disabilities do not meet the requirements.

“On behalf of my constituents in Michigan who would are impacted by the Settings Rule, I thank you for your consideration of these concerns. As a member of the House & Energy Commerce Committee, please know that I stand ready to work with you to ensure the HCBS final rule promotes greater choice for individuals with disabilities so that they can reside in the settings that best meets their distinct needs.”

See also, 

"U.S. Representatives raise concerns about restrictions on group settings for people with disabilities", 11/27/17 

HCBS Advocacy Website

"Guidance on Settings that have the Effect of Isolating Individuals Receiving HCBS from the Broader Community" from CMS, 3/17/2014

"Legal Vulnerabilities of CMS’s Regulation of Home- and Community-Based Settings”

Monday, March 12, 2018

Michigan Guardianship Association Spring Conference 2018

Charlevoix Spring

Michigan Guardianship Association’s 2018 Spring Conference

April 12th and 13th, 2018

This event will be held at the Radisson Hotel at the Capitol: 

111 N, Grand Avenue
Lansing, MI 489333

"Curriculum includes changes in Adult Foster Care rules and updates on Veterans Benefits and the Medicaid waiver program. We are also glad to announce the return of the guardianship roundtable, judges panel, and the basics of guardianship and conservatorship. Network with professionals from all over the state and meet new vendors offering services specific to your needs. All while earning an estimated 8 continuing education credits (for guardians and social workers)."

Excerpts from the conference Agenda :

Thursday, April 12th, 2018 

Understanding the Michigan Community Mental Health System

Lynda Zellar, Senior Deputy Director Behavioral Health Administration, Michigan Department of Health and Human Services

Robert Sheehan, Chief Executive Officer Community Mental Health Association of Michigan

Guardianship Roundtable 3:30 - 4:30 p.m.

Friday, April 13th, 2018 

Judges Panel
9 - 10 a.m. 

Presentation on the MI Choice Medicaid Waiver program, 10 - 11 p.m.
The MI Choice program furnishes an array of home and community-based services to assist aged and disabled Medicaid beneficiaries to live in the community who would otherwise be institutionalized in a nursing home. Through this program, eligible adults who meet income and asset criteria can receive Medicaid-covered services like those provided by nursing homes, but can stay in their own home or another residential setting.

Guardianship roundtable
, 11:20 - 12:20

Thursday, March 1, 2018

Guns and Mental Illness : A "Dear Congress" letter from the mother of a son with bipolar disorder and his experience in his own words

2016 Ted Talk by Eric Walton from Boise Idaho

The life of Eric Walton … mental illness and fear until the age of thirteen. Now, three years after diagnosis and treatment, Eric talks about what it is to have bipolar disorder, what it is to grow up surrounded by fear and stigma, and what each person can do to help fix the issues surrounding mental illness. He helps us understand, from the inside, his journey from fear to strength.

His mother Liza Long responds to the Parkland shooting:

“What worked best for my son was the correct diagnosis. But sadly, the level of treatment we were able to access because of my viral essay remains out of reach for many children and families. In my response to the Parkland shooting published on 'The Mighty'  and on my blog, 'The Anarchist Soccer Mom', I called on Congress and the NRA to fund research and treatment for mental illness"

Monday, February 19, 2018

Protect, Provide, and Prosper: Securing the future for Families with Special Needs

from St. Louis Center in Chelsea, Michigan:

You are invited to a seminar on Securing the Future for Families with Special Needs

St. Louis Center Family Welcome & Orientation Center 

Thursday, February 22, 2018

7 - 9 p.m.
16195 W. Old US Hwy. 12
Chelsea, MI 48118 

Please contact Joe Yekulis, PR Director, at 734-475-8430 for more information or to register. To learn more about St. Louis Center, visit the website at .


Many families of children or adults with special needs have a difficult time navigating the future for their loved ones, and advanced planning can ensure a positive quality of life for years to come. 

In this program, our guest speakers will address two important issues. The first is an important issue for parents of adult children relating to the early onset of Alzheimer’s disease in persons with I/DD, and the second issue will address the importance of parent advocacy in accessing government services for a loved one. 

Please join us for an informative evening of education and information sharing among parents dealing with these important subjects. 

Accessing the “Systems” Maze 


JUDITH GREENBAUM, PHD has been an advocate for people with I/DD for nearly half a century. She possesses a PhD in Special Education and is also the parent of an adult child at St. Louis Center. Her Bachelor’s Degree and Doctorate are both from the University of Michigan. Judy was instrumental in leading a grass roots effort to pass the Michigan Mandatory Special Education Act in 1971 which made it mandatory for schools to educate  children w/IDD from birth to 26 to help them to reach their maximum potential. Her last book published in 2007 is titled, "Life Planning for Adults with Intellectual and Developmental Disabilities". 

Coping with Alzheimers


DEANA FISHER, MSW became the COO of St. Louis Center in March 2017 following a career of working in Wayne County and the City of Detroit. Before arriving in Chelsea, she served as Director of the Children’s Center in Detroit where she supervised foster care, licensing and the Young Adult Program. She also gained valuable experience at the Lula Belle Stewart Center, the Children’s Aid Society, Families First, the Northeast Guidance Center, and the Wayne Center in Detroit. She has a B.A. in 
Social Work from Alma College and an MSW from Wayne State University. She was recently trained as an instructor for the National Task Group on Intellectual Disabilities and  Dementia Practices. 

Tuesday, February 13, 2018

Saline, Michigan: Families take the initiative in creating new housing for people with DD

Read and listen to a Michigan Radio (NPR) interview, “People with disabilities at heart of new Saline neighborhood” by Doug Tribou, 1/29/18. Patty and Karl Rabe of Saline, Michigan, down the road from Ann Arbor, have joined with other parents and a local developer to create a new neighborhood that will include housing for their adult children with DD.

Their son, Bill Rabe, is 28 years old and lives with his parents. He has developmental disabilities including severe speech and vocabulary problems and needs someone around to help him. He will be living in a condominium in the new neighborhood and sharing resources with other adults with DD. His parents will also move into the planned community and be close by if Bill needs their help. According to the interview, “..Bill holds down two part-time jobs, is a Special Olympian, and likes to watch movies and play video games. His favorites are hockey games. “

The new neighborhood is called Maple Oaks; groundbreaking took place in October 2017. This project is the result of years of planning by the families, the developer, and the community of Saline. There is a great deal of excitement looking forward to the success of this project, in stark contrast to other communities that have reacted with fear and ignorance at the prospect of providing homes for people with DD.

According to the Saline Sun Times News in an article“New Residential Housing Development Planned For Saline In Demand" by Angelo Parlove from 7/14/17, “A project team led by William Godfrey, who is the principal at Three Oaks Development and Advisory Services in Ann Arbor, plans to bring a multi-family development containing 34 units, which will consist of 10 single-family homes, eight duplexes and two community buildings which will hold another eight units each.”

Another article in the Saline Post “Saline Approves Final PUD for Development of 600 North Maple Road” by Tran Longmoore, 07/25/2017, describes the changes to zoning for Planned Unit Development or PUD that allows mixed density residential development for this project.

The developer William Godfrey said of the people moving into the new community, “some families already reside in Saline, while some are coming from out of town. Buyers include empty nesters who want to live close to family, families with children with special needs and young families who want to live near the middle school.”

The NPR interview and the additional news articles give a good idea of the intricacies of planning a neighborhood that prides itself in including housing for people with developmental disabilities.

Desiree Kameka from Madison House Autism Foundation, who was interviewed by NPR,  lauds the Saline community for providing stable housing for adults with DD. “Kameka says unlike group homes, the families will own the condos, giving them more control. Most of the young adults qualify for some government funded in-home care. The families are hoping to pool some of those resources…'They know that that housing will be secure...that their loved ones will never be kicked out, just getting placed in the next empty bed counties away, because a provider decides they don’t want to serve that person anymore.’"

Not everyone agrees that this project is a good way to integrate and house people with disabilities in the community: 

“Dohn Hoyle thinks the Saline project falls short. Hoyle is the public policy director for the ARC Michigan. Because the condos will have 24-hour care and house only residents with disabilities, Hoyle sees less independence than what’s being marketed…’It will be their own place in the sense of their own condo, but remember what you’ve done is you’ve set up a group-living situation [by] having everybody who lives there have a disability,’ Hoyle said.”

Dohn Hoyle appears to be discounting or overlooking friendships and a desire to live together among some people with disabilities, the opportunity to rein in costs and improve services by sharing resources, the choice of people with disabilities and their families to live in such a community, and the excitement and enthusiasm by the Saline community for the success of the new neighborhood. 

Let’s hope that Hoyle does not lobby the State to refuse funding for services to the disabled residents as he has done in the past: 

The ARC Michigan: Our Way or the Highway

The ARC Michigan to the State : Stop funding congregate settings

Thursday, February 8, 2018

A Disability Organization Misleads Self-Advocates and Families to Promote a Call-in Campaign to Legislators

TASH, an influential disability organization that “advocates for human rights and inclusion for people with significant disabilities and support needs - those most vulnerable to segregation, abuse, neglect, and institutionalization”, recently sent out this Action Alert to self-advocates and families:

January 25, 2018

Dear Self-Advocates and Family Members,

We need you to take action right now! Our representatives and senators are hearing from Voice of the Retarded (VOR) and other parent groups that believe we should live in institutions and that the community is not a safe place for us to live. We need to tell them that the community is not bad and there are safe places. We need to tell them that there are many people with disabilities living in the community that are safe and happy, and have the support they need. So please ask your groups to do the following: 

  • Call your legislators and tell them about how you live in the community and how you are happy. 
  • Ask your members and other people with disabilities to write and share their story. 
  • Go visit your legislators and tell them how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community. 
  • Share this alert with others and ask them to do the same. 
Please email your letters to Tia Nelis, TASH's Director of Policy and Advocacy, at

TASH's Self-Advocacy Committee

As a parent of two sons with profound intellectual and developmental disabilities and as a member of VOR for more than 15 years, I am compelled to respond to the TASH Action Alert to correct misleading information and to stop the misuse of that information to promote a call-in campaign to legislators.

VOR’s Name

The name of VOR is VOR ! The organization was founded in 1983 as “Voice of the Retarded” at about the same time that TASH was changing its name from “The Association for the Severely Handicapped” to “The Association for Persons with Severe Handicaps”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations removed the word "Retarded" from their names and from the discussion of issues related to this segment of the developmentally disabled population.

"The Association for Persons with Severe Handicaps" eventually became TASH, just as "The Association for Retarded Citizens" became The ARC, and "Voice of the Retarded" became VOR. I believe VOR started using the acronym for the organization as its primary identification more than 10 years ago and the name was officially changed with the passage of Rosa’s Law in 2010. Rosa's Law removed the term mental retardation from most federal legislation and substituted the term intellectual disability. The definition did not change, however, and Rosa’s Law did not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

Institutional vs. Community Living

To say that VOR believes that people with disabilities “should live in institutions and that the community is not a safe place for us to live” is false and misleading. A Policy and Position Statement is on the VOR Website that includes these statements:

“VOR supports both ICF/IID homes and quality community-based service options based on individual need. VOR advocates for the right of individuals with intellectual and developmental disabilities and their families to choose from a full array of high quality residential and other support options including own home, community-based, and large settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)." 


“VOR supports safe and appropriate quality care in the community. When federally-licensed specialized settings (e.g., ICF/IID) are closed, individuals with profound I/DD, multiple disabilities, serious medical problems, and behavior challenges are removed to 'community-based' settings often with poorly trained staff and inadequate health and safety measures in place. Individuals with severe disabilities living at home or in other community settings often experience the same problems with poor care. By developing and promoting community care standards, VOR aims to address this widespread concern and avoid predictable tragedies, as reported in the media, state audits and peer-reviewed studies.”

Furthermore, VOR’s position on institutional care is consistent with the 1999 U.S. Supreme Court Olmstead decision. 
The importance of individual choice is repeated throughout Olmstead’s majority opinion as follows: “We emphasize that nothing in the ADA [Americans with Disabilities Act] or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”..."the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk...Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting..."..."For some individuals, no placement outside the institution may ever be appropriate.”..." Each disabled person is entitled to treatment in the most integrated setting possible for that person –recognizing on a case-by-case basis, that setting may be an institution.”

Safety in the Community

Safety in the community for people with disabilities is of paramount importance to most people with disabilities and their families. In January 2018, The U.S. Department of Health and Human Services, the Administration on Community Living and Office for Civil Rights issued a joint report on an investigation of community group homes. According to Disability Scoop in an article about the joint report, “An audit of three states found that officials routinely failed to follow up on incidents ranging from head lacerations to loss of life in violation of federal and state policy. The issues are believed to be systemic affecting people with developmental disabilities residing in group homes across the country.”

In other living situations where people with disabilities live in unlicensed and poorly supervised settings and without sufficient support services, incidents of abuse and neglect occur, but they often go undocumented.

While VOR is concerned with safety in all settings where people with disabilities live and receive services, VOR has never claimed that safety does not exist nor that it is not possible in community settings.

The TASH Action Alert

There is nothing wrong with self-advocates and families telling legislators “how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community,” but the implication in this Action Alert is that VOR is a threat to community living. On the contrary, VOR supports a full array of services and residential, employment, and educational options to meet the needs of a diverse population.

TASH owes an apology to its members, especially to self-advocates and families, whom the organization has misinformed. I hope that, at the very least, future pronouncements by TASH will be checked more closely for accuracy and will avoid unfounded accusations about other organizations.

Jill Barker
Ann Arbor, Michigan


About TASH

About VOR

VOR Olmstead Resources

"Celebrating the 17th Anniversary of the Olmstead Decision: Opportunities and Choices"