Sunday, November 30, 2014

MI HCBS Transition Plan - comments due 12/24/14

The Michigan Department of Community Health has released its transition plan for implementation of the federal Home and Community Based settings rule that was issued in January 2014. The announcement begins with a summary of the purposes of the rule. This characterization does not include any of its negative features such as limiting choice for individuals with DD who choose to live or receive services in congregate settings (more than 3 or 4 people with disabilities living  or receiving services together), including planned or intentional communities. Neither does it include exceptions to the rule for health and safety reasons.

To decipher the acronyms used in the transition plan document, refer to page 1, row 1, and the last two columns to the right under "Sources" and "Key Stakeholders". 


The Centers for Medicare and Medicaid Services recently made a new set of rules for the delivery of Home and Community Based Services through Medicaid waiver programs. Through these rules, the Centers for Medicare and Medicaid Services aim to improve the experience of individuals in these programs by enhancing access to the community, promoting the delivery of services in more integrated settings, and expanding the use of person-centered planning. 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.

Overview of the Settings Provision

The final rule requires that all home and community-based settings meet certain qualifications. These include:

* The setting is integrated in and supports full access to the greater community;
* Is selected by the individual from among setting options;
* Ensures individual rights of privacy, dignity and respect, and freedom from coercion and restraint;
* Optimizes autonomy and independence in making life choices; and
* Facilitates choice regarding services and who provides them.

The final rule also includes additional requirements for provider-owned or controlled home and community-based residential settings. These requirements include:

* The individual has a lease or other legally enforceable agreement providing similar protections; 

* The individual has privacy in their unit including lockable doors, choice of roommates and freedom to furnish or decorate the unit;
* The individual controls his/her own schedule including access to food at any time;
* The individual can have visitors at any time; and
* The setting is physically accessible.

Below please find links to Michigan's HCBS Transition Plan as well as links to source documents about the HCBS rule change from the Centers for Medicaid and Medicare Services.

The MI Home and Community Based Settings rule Transition Plan

The Department released the draft plan for public comment on November 24, 2014 and will be accepting comments until December 24, 2014. You may submit comments regarding the transition plan by e-mail to:

or by mail to:

Attention: HCBS Program Transition
Medicaid Policy
Michigan Department of Community Health
P.O. Box 30479
Lansing, Michigan 48909-7979

All comments on this topic should include a "HCBS Transition Plan Comment" reference somewhere in the written submission or in the subject line if an e-mail is used. Comments and related responses will be available on this website following the end of the comment period. Please list or summarize your comments in a document or email. Please do not submit an electronic version of the draft statewide transition plan using the "track changes" function.

The purpose of this review and comment on the draft statewide transition plan is to develop and implement the best plan and process possible for review and assessment of settings. Discussion regarding evidence that a particular setting is "home and community-based" and/or similar comments will not be considered. Please limit your comments to the content of the draft plan.

-MDCH Website

Centers for Medicare and Medicaid Services
The Centers for Medicare and Medicaid Services have provided fact sheets, webinar slides, informational bulletins, and toolkits HERE .

Sunday, November 23, 2014

"The Day 'Autism' Died" - a parent's frustration with the language of autism

The Autism Society San Francisco Bay Area blog has a post from a parent who felt the extreme frustration that many others felt when Jerry Seinfeld mentioned in an interview recently that he just might be on the autism spectrum.  Here are excerpts from the blog post:
The Day "Autism" Died
by Jill Escher, president of the Autism Society San Francisco Bay Area

The word "autism" died last week, it ceased to retain any power to create a shared understanding, which is, after all, the very purpose of language.

I'm not bemoaning that Jerry Seinfeld felt himself to have some social anxieties or even that he referred to himself as on the autism spectrum, it's just that I'm plain done with the autism community's failure to have developed a robust enough vocabulary to carve out meaningful distinctions among the wildly diverse assortment of profound pathologies and mere personality accents we have come to think of as "autism"….

….absurdly, competent fully and functional people can be popularly understood as having "autism," even though they in no way resemble people like my own children, who are nonverbal, can't dress themselves, cannot play or have a conversation, will never work, will never have friends, and will require lifetime of 24/7 care…

…It's time for reasonably intelligent people to cry, "Enough!" Words can do harm, but perhaps just as importantly, lack of words can do harm. Now with a half million with more severe forms of autism and probably at least as much with higher functioning forms, we need to radically expand our vocabulary to make the practical distinctions necessary for the shared understanding of the needs of this population and the profound challenges they very often face...

Read more from the Autism Society San Francisco Bay Area Website and Blog:

Friday, November 21, 2014

Michigan: Links and information on HCBS transition plans

New federal rule for HCBS settings: integration or limited choice?

In January 2014, the federal Centers for Medicare and Medicaid Services (CMS) issued a new rule for Home and Community Based Service (HCBS) settings that restricts the use of Medicaid funds to settings that are deemed to be integrated into the community as determined by CMS and in CMS approved state plans for implementation of the new rule. The new rule applies to all Medicaid waivers and the overall State Plan that lays out how the state intends to provide services and residential supports to people with developmental (and other) disabilities.

States have a maximum of 5 years to comply with the new rule and there should be numerous opportunities for public comment on the transition plans for implementation. The transition plan for a modified Habilitation Supports Waiver (HSW) for people with developmental disabilities has been proposed and public comments to the Michigan Department of Community Health were due on September 26, 2014.(Don't let due dates bother you too much; you can always comment to state and federal officials on public policy any time you feel moved to do so, but adhering to deadlines doesn't hurt.)

Another transition plan for the state will be available for public comment soon. You can keep updated on transition plans, modifications to waivers and state plans, and dates for public comment at this Website, HCBS Advocacy, and here, at the Website page specifically for Michigan. Other background information is also available.

Reading some of the materials may make you feel like you have entered Alice's Adventures in Wonderland, and you have my sympathy. The main things to keep in mind are:

  • Are the plans and proposals you are being asked to comment on clear and understandable to you so that you know exactly what the state has in mind? If not, that may be your first comment.
  • How will the plan or proposal affect your disabled family member (or friend)? 
  • What if things change in the future for your family member? Will the proposal or plan allow enough flexibility to anticipate future events or changes in need that may affect services and living arrangements for your family member.
In other words, you shouldn't have to be a policy expert to read and interpret changes that could have a significant effect, good or bad, on the person with a disability and your family. Start with what you know and do the best you can. Ask a lot of questions where the policy is unclear or you think the state (or the CMS) has not thought through the long-term consequences of their proposals.

Links to the Final Regulation from CMS on the HCBS settings rule.
Webinar from the Michigan Department of Community Health on the MI Transition plan.
Frequently Asked Questions from ACCSES, a national providers organization.
Coalition for Community Choice ; The contact for CCC is Desiree Kameka at

Thursday, November 13, 2014

Disability Politics: Divide and Conquer

These remarks were made when Thom Tillis was the North Carolina Speaker of the House. He is now the U.S. Senator-elect from North Carolina:

"What we have to do is find a way to divide and conquer the people who are on assistance," Tillis said. "We have to show respect for that woman who has cerebral palsy and had no choice, in her condition, that needs help and that we should help. And we need to get those folks to look down at these people who choose to get into a condition that makes them dependent on the government and say at some point, ‘You’re on your own. We may end up taking care of those babies, but we’re not going to take care of you.’ And we’ve got to start having that serious discussion." 


Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when she talked to reporter Beth Miller about federal funds paying for services for people with disabilities who choose to live in congregate care (more than 3 or 4 people with disabilities living together):

"...she does not want government money used to support segregated communities for people with disabilities. That money should go to those who can live in ordinary community settings and want to do so. 

"'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don't suck it all up because you want to live in summer camp forever.'" 

In response to these comments, Dr. Lanny Edelsohn wrote in an opinion piece about McMullin-Powell's remarks:  "...I am nonetheless most grateful for her finally revealing something that many in the disability community have long suspected but no one has yet had the courage or honesty to admit: that at the end of the day, this battle over the direction of the Medicaid waiver, while superficially clothed in the appealing rhetoric of 'rights,' is, like many things, actually about money." [emphasis added] 


Then there is this from The Press Democrat: "Close to Home: Time to end war over the Sonoma Developmental Center" by Kathleen Miller, 11/8/14. Kathleen is president of the Parent Hospital Association at the Sonoma Developmental Center in Sonoma Valley, CA. 

"...Following the [Halloween] parade, I took my son out to lunch. While at one of the local restaurants, I ran into a former SDC employee who now works for a community day program provider. Her clients were eating there also, and we enjoyed a brief minute to chat. I reminded her that it was parade day at Sonoma Developmental Center. She had always been an enthusiastic participant during her years working at the center, and we both agreed what fun it would be if her community clients could join with SDC residents and participate in the parade.

"She shook her head and shared that it was frowned upon for those in her program to in any way participate at SDC events. I didn’t have to ask why. It is an old battle that continues today.

"As long as I have been aware of developmental centers and community services outside of the centers, I have also been aware of the friction between them. Care providers tell their clients horror stories about what life is like inside developmental centers. They bring them to legislative hearings to urge for closure even if these same clients have never set foot inside of a developmental center."


Kathleen Miller would like to create "...a seamless system that serves all of the developmentally disabled populations, including those that regional centers struggle with. We need to find ways to use the Sonoma Developmental Center infrastructure to create something special, a system that can fill the gaps in care that exist in today’s system. We need a system that cannot only help the center’s residents but those in community setting where services are not working."

She is disheartened by the old voices that only want closure, but she is also hearing new voices that give her hope:

"These new voices either know nothing about the old battle lines or want to rise above them. It is my hope that together we will be those who decide the future of Sonoma Developmental Center and of the system of care going into the future."

Delaware: Funding for innovative housing for DD - Whose money is it, anyway?

Many housing projects, including planned communities for people with developmental disabilities, have been built in recent years that use flexible Medicaid funding to provide services to people wherever they choose to live. Federal Medicaid law explicitly prohibits Medicaid waiver money or other Home and Community Based Services (HCBS) funding from paying for housing. Many family organizations, however, have built or found housing that is uniquely designed for people with very specialized needs and have then used HCBS funding to pay for services for the individuals who live in these homes. 

A new rule from CMS, the federal agency that regulates Medicare and Medicaid, has set standards for what CMS considers to be suitable settings to promote integration into the community.  

Consistent with the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision, states must administer the full array of home and community-based services in the most integrated setting appropriate to the needs of qualified individuals with disabilities. The new rule, however, threatens to limit Medicaid funds in settings that are deemed too institutional in nature by CMS standards and force individuals with disabilities to jump through hoops to justify their choices, if they want to live in settings that come under special scrutiny by the CMS. In addition, many advocacy organizations that ideologically support forced deinstitutionalization and oppose all congregate settings (settings that serve more than 3 or 4 individuals with disabilities together), are pushing to have states limit and eliminate settings that they do not like. This is a problem, especially for people with the most severe and complex disabilities who are also people who often need and benefit most from congregate care or services in congregate settings.

Disability advocates claim that their ideological opposition to congregate care is supported by the 1999 Supreme Court Olmstead decision, but that is a misrepresentation of the decision's mandate. The Supreme Court took a balanced approach, finding that unjustified isolation of individuals with disabilities is discrimination under the Americans with Disabilities Act, but they explicitly stated that they did not condone "termination of institutional settings for persons unable to handle or benefit from community settings." They also recognized "… the States' need to maintain a range of facilities for the care and treatment of persons with mental disabilities, and the States' obligation to administer services with an even hand." The Supreme Court held that states may move people from institutional care to community only as long as the individual does not oppose the move. And, “…the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘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".

The Delaware Homes for Life Foundation sponsored a conference on October 31, 2014, called "Innovations in Residential Neighborhoods". Homes for Life was founded by Dr. Lanny Edelsohn and his wife Micki, the parents of an autistic adult son. The foundation has raised millions of dollars to build and furnish 27 homes for people with autism and other developmental disabilities. 

The conference was covered in an article on Delaware Online on 11/1/14 entitled  "Those with disabilities: Where should they live?" by Beth Miller. One of the speakers at the conference was from The Arc Village in Jacksonville, Florida, where ground will be broken soon on an $18.6 million, 97-unit community of affordable duplexes and triplexes to be rented by those with intellectual and developmental disabilities. Some of the discussion was about whether the new CMS rule on HCBS settings would allow residents who choose to live in planned communities access to Medicaid HCBS funding to pay for services where they live.

While the purpose of the conference was to showcase innovative housing ideas from around the nation, it was covered as a civil rights battle "simmering not far below the surface of local and national discussions on how and where people with intellectual and developmental disabilities... might live and work in the future."

Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when talking to the reporter about where she stood on the issue: 

"…to Daniese McMullin-Powell, a longtime disability rights activist who has handcuffed herself to the White House fence to make her case against life in institutions, the day's discussions made her feel like she had been to a 'segregationist meeting.'

"McMullin-Powell uses a power chair because of post-polio syndrome. She has children and grandchildren with a variety of disabilities – including autism and Down syndrome, she said.

"She wants all of them to have access to full lives in their communities. But she does not want government money used to support segregated communities for people with disabilities. That money should go to those who can live in ordinary community settings and want to do so.

"'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don't suck it all up because you want to live in summer camp forever.'"

Dr. Lanny Edelsohn answered the "startling" remarks by Deniese McMullin-Powell in an opinion piece, "Delaware must be open to new ideas on housing" on 11/4/14 on Delaware Online

"Beth Miller’s recent article… shines a most welcome light on an urgent issue in Delaware: the affordable housing crisis for adults with intellectual and developmental disabilities. In the state of Delaware, there are 2,900 persons living at home with parents who are 60 or older. These parents all ask the same question: 'What will happen to our loved ones when we are gone?'"

He goes on:

"In the article, I was startled to read the virulent comments by Daniese McMullin-Powell, Chair of the State Council for Persons with Disabilities, who had remained silent during the conference. While I disagree with each of her assertions as baseless, including her comments that she thought she was attending a segregationist meeting of rich white people (the conference was free, the attendees were clearly diverse and a tax return was not a requirement for admission), I am nonetheless most grateful for her finally revealing something that many in the disability community have long suspected but no one has yet had the courage or honesty to admit: that at the end of the day, this battle over the direction of the Medicaid waiver, while superficially clothed in the appealing rhetoric of 'rights,' is, like many things, actually about money. [emphasis added]

“'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don’t suck it all up because you want to live in summer camp forever.'

"By day, I am a neurologist who treats persons with autism, Down syndrome and other central nervous system disorders where there can be self-abusive behavior, PICA (eating foreign objects) or progressive early onset Alzheimer’s disease. Every week I treat patients who are in great need of safe and supervised environments. And I see families, struggling bravely and under great adversity, to care for them, often as their own health and welfare decline. I can assure you, from the patients I treat, that life is not a “summer camp”; rather, it more often resembles an exhausting challenge of relentless obstacles."

Thank you, Dr. Edelsohn. I couldn't have said it better myself.

Friday, November 7, 2014

Housing crisis facing those with autism and others with DD

This is an animation from the Madison House Autism Foundation 

Where will 4.903 million individuals live?

Here are the facts:

There are 3.775 million people with Intellectual and Developmental Disabilities (I/DD), 77%, who do not receive publicly funded residential supports.

1.127 million people with I/DD, or 23% do receive publicly funded supports. Of those, 56% live with family and 44% do not live with family.

Of the 44% who do not live with family, 127,000k or 27% live in their own home. The other 73% live in group homes (290k), foster homes (44k), nursing facilities (34k), and less than 1k live in psychiatric facilities.

From 2001 to 2011, 275k additional people got residential supports: 180k stayed with family and 95k moved out.

77k are on the waiting list for services needed in the next year. 853k are living with caregivers aged 60 or over. 


Family awarded $3M in wrongful prosecution case involving facilitated communication

The Detroit Free Press reports that the family of an autistic girl won a $3M award in a Federal  lawsuit for wrongful prosecution against the Oakland County, Michigan, prosecutors office. The article, "Jury awards $3M to Wendrows in wrongful prosecution case" by Lori Brasier and John Wisely, summarizes the case that has drawn national attention because it involved the use of a widely discredited communication technique called "facilitated communication" as evidence of criminal wrongdoing by the parents of a severely disabled autistic girl.

Julian and Thal Wendrow of West Bloomfield, Michigan, were arrested in late 2007 after their 14-year-old daughter supposedly typed on a keyboard that her father raped her while her mother looked the other way. The daughter communicated through a facilitator, an aide at her school, who guided her hand over the keyboard, but she was otherwise unable to speak. The girl was later found in court to be unable to answer questions when the facilitator was our of earshot. This is consistent with court findings in other cases involving FC: "The typing, a controversial method known as 'facilitated communication,' had been widely debunked in the last two decades. Research always found it was the aide guiding the disabled person's hand, either consciously or unconsciously."

This did not stop the prosecutors, however: "Nevertheless, then Oakland County prosecutor David Gorcyca, his chief assistant, Deborah Carley, and assistant prosecutor Andrea Dean pressed on with the prosecution, even as news reports showed the method was unreliable."

In my opinion, the most egregious wrongdoing in the case involved the autistic girl's brother, who is also autistic but is much higher functioning than his sister: "Ian, who received the largest part of the jury award, was interrogated for two hours by West Bloomfield police who told him they had videotape of his father assaulting his sister. Police never had such a tape and the claim was a lie that a psychologist would later testify left the boy traumatized. Jurors did watch a video showing Ian's interrogation, in which the boy, then 13, doubled over in tears."

There was no physical evidence to support the rape charges. And, "the typed statements said the girl was coming forward because she feared going to hell for lying. But lawyers pointed out the Wendrows are Jewish and don't believe in the Christian concept of hell."

Defendants in the lawsuit were all from the Oakland County prosecutor's office: 

Former Prosecutor David Gorcyca who left office in 2008 was found to have "…defamed the family when he insisted months after he left office, and a year after the case was dropped, that the Wendrows were in fact guilty of abusing their daughter." He now works as a defense attorney.

Gorcyca's assistant Deborah Carley was found by the jury to have violated the constitutional rights of the autistic girl's brother. "Carley now heads the Children and Youth Services Division for the Michigan Attorney General's office," according to the article.

Assistant prosecutor Andrea Dean was also a defendant in the case.

Deborah Gordon, a Bloomfield Hills attorney, represented the family throughout the suit.

More coverage of the trial by the Detroit Free Press:

"Wendrow lawsuit against ex-prosecutors to begin", 10/7/14  

"Lawsuit against ex-Oakland prosecutors gets under way", 10/8/14

"Attorney: Prosecutors ignored truth in charging couple", 10/9/14 

"Ex-prosecutor: Autistic girl was communicating in rape case", 10/14/14

"Former Oakland prosecutor defends actions in Wendrow case", 10/31/14