Thursday, March 27, 2014

Michigan Medicaid Waivers

Michigan Medicaid Waivers, especially those that provide home and community based services to children and adults with developmental disabilities, are a great mystery to many people with DD and their families. There is also a great deal of misinformation about them that gets passed around.  

Medicaid Waivers are agreements between the state and the Centers for Medicare and Medicaid Services (CMS), the federal agency that regulates Medicaid, about how the state will provide services to different populations of Medicaid beneficiaries. These are renewed or changed periodically and it is important to be aware of when this is happening. The public must be given ample opportunity to comment on proposed changes. 

This is a Michigan Department of Community Health website that links to the approved waivers. Each one includes a great deal of information (more than you will probably need) including eligibility for waiver services and the services that must be made available. 

Of particular interest to adults and children with DD are the Habilitation Supports Waiver and the Children's Waiver Program.

Michigan Forum on Integrated Care for Dual Eligibles

The Integrated Care Forum is about Michigan's plan, scaled back to a 3-year demonstration project, to integrate care for dual eligibles (beneficiaries of both Medicare and Medicaid). A surprising number of dual eligibles have developmental disabilities, are under the age of 65, and receive DD mental health services from local Community Mental Health agencies making this an important issue for people with DD.

The demonstration project will be implemented in four regions of the state:
  • Region 1: all counties in the UP
  • Region 4: Southwest Michigan including Berry, Berrien, Branch, Calhoun, Cass, Kalamazoo, St. Joseph, and Van Buren Counties.
  • Region 7: Wayne County
  • Region 9: Macomb County
The forum in Kalamazoo was postponed in January 2014 until April 2014:


SAVE THE DATE: Integrated Care Implementation Forum - Rescheduled for Kalamazoo

Dear Stakeholder:

The Michigan Department of Community Health (MDCH) will be hosting a public forum on the state’s plan to integrate care for individuals who are dually eligible for Medicare and Medicaid on April 8, 2014 at the Radisson Plaza Hotel and Suites, located at 100 W. Michigan Avenue in Kalamazoo.  The forum will be held in the Arcadia Ballroom located on the main level from 10:00 a.m. to 12:00 noon EST.

MDCH is providing a conference line for interested stakeholders to participate by phone.  The conference line information is also posted on the Integrated Care website.

Call-in number: 888-363-4734
Access number: 4162210

There are 250 lines available on a first come first served basis.  We encourage organizations to listen in groups in order to maximize lines available for others.  If you get a message stating “Please try your call again later”, all lines are full.

Prior to the forum, the presentation will be available on the Integrated Care website .

A local map to the Radisson Plaza Hotel and Suites can be found here

The address for personal GPS and online mapping systems is:

100 W. Michigan Avenue, Kalamazoo, MI 49007

Parking is available in the hotel’s attached parking garage. Green parking passes will be available at the forum registration table to cover the cost of parking for participants.  When leaving the parking garage, enter your parking ticket into the machine followed by the green parking pass to avoid a parking fee.

Complimentary valet parking is available to those utilizing wheelchairs or with accessibility/mobility issues.

For interpreting services, or other accommodations at the forum, contact the Integrated Care Division at 517-241-4293.

Tuesday, March 25, 2014

Navigating Health Care Reform

Prickly Hearts
We are fortunate in not having to deal with changing health insurance. Our sons have been covered by Medicaid since they were 18 years old in a Medicaid friendly part of Michigan. Medicaid also pays for the services they need as developmentally disabled adults. Medicaid expansion should help more children and adults with disabilities qualify for mental health services if they have mental illness or  DD.

Last Sunday, 3/23/14, The Detroit Free Press published a whole section on navigating health care reform with about 50 links to articles on just about every topic concerning the Affordable Care Act and obtaining health insurance you could imagine. Here is the introduction to the On-Line version of the DFP's special health care section:

Are you ready?

The most contentious piece of federal health reform legislation – a requirement that every person have health insurance by next year or face tax penalties – has begun. It is officially named the Patient Protection and Affordable Care Act, although some groups refer to the legislation as just the Affordable Care Act, ACA or "Obamacare." The enrollment period began October 1 and runs through March 31. Many Michigan residents will be able to buy insurance through the Michigan Health Insurance Marketplace, an online exchange where the coverage may be more affordable. If you have questions, let us know and we'll try to find answers. Write:

Good luck to those who have not yet signed up for a workable health insurance policy.

Monday, March 10, 2014

Community Choice Coalition letter to CMS on new HCBS Rule

The Community Choice Coalition (CCC) is a national coalition of organizations supporting increased housing options for people with disabilities. The CCC has written a letter to Marilynn Tavenner at the Centers for Medicare and Medicaid Services regarding the recent Home and Community Based Services Setting Final Rule (CMS 2249-F/2296-F) expressing its support of a broad range of housing options to solve the national housing crisis for people with disabilities. The letter is signed by JaLynn Prince, the President of the Madison House Autism Foundation in Rockville, Maryland, and 41 other organizations from around the country. Madison House Foundation is a public 501(c) (3) national organization working to eliminate barriers and increase opportunities for the rapidly growing numbers of adults with autism.

This is the body of the letter that was sent on March 4, 2014:  

Dear Administrator Tavenner:

Madison House Autism Foundation and the supporting signatories offer appreciation of the earnest effort to balance many perspectives in your consideration of Home and Community Based Services (HCBS) Settings Final Rule (CMS 2249-F/2296-F).

We were pleased to see that CMS is moving toward valuing the individual’s choice and experience of home and community as described:

"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." [Page 1, Summary of Key Provisions in the HCBS Setting Final Rule]

The process of public comments brought together many like-minded stakeholders who desire and support a full array of housing choices. These voices are no longer fragmented. We have united to establish the Coalition for Community Choice (CCC) and today, I am writing on our behalf. The Coalition for Community Choice believes people with disabilities should have the broadest range of affordable and accessible housing options, and we encourage the formation of public-private partnerships to create local solutions for the national housing crisis.

We look forward to ongoing opportunities to work with CMS to offer more affordable and accessible housing options that meet the needs of such diverse populations. We are happy to provide information or insight to the issues that many people with intellectual and other developmental disabilities and their families face. To that end, CCC expressly requests the opportunity to review proposed State Guidance Letters and provide input before publication.

Thank you again for your efforts to consider so carefully all stakeholdre input, and for the robust public comment opportunities at the state and federal levels that remain part of the Final Rule. We sincerely hope that CMS will continue to welcome public input as Guidance letters are drafted.


JaLynn Prince, President and Co-Founder
Madison House Autism Foundation 

The letter is co-signed by representatives of 6 national organizations and 35 other organizations from Arizona, California, Colorado, Delaware, District of Columbia, Florida, Maryland, Massachusetts, Michigan, Nevada, New Hampshire, North Carolina,  Ohio, Texas, Virginia, Washington, and West Virginia.

Friday, March 7, 2014

VOR: Refusing to redefine individual choice

This is from featured news on the National Autism Network website:
Meet VOR: An organization that unites by refusing to redefine individual choice

Mar 04 2014

By Tamie Hopp, VOR Director of Government Relations & Advocacy

I am delighted to have this opportunity to introduce you to VOR, an organization that is really like none other.

VOR is a national, nonprofit organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

We are the only national advocacy organization that has not redefined terms that other disability advocates have hijacked, like “choice” and “community.” 

For 30 years, VOR has remained true to the families we represent by putting their seasoned insights and perspectives first. To us and them, “choice” really means choice. Our advocacy is driven and guided by an undeniable truth: Individuals and their families know best.

To get to know VOR even better, we are offering a complimentary e-subscription to our publications through June 2015, no strings attached, including our weekly VOR E-News Update and our newsletter, The Voice, published three times a year. Just send your email address to with your request. Your email will never be shared or sold.

You will find VOR unique and refreshing in this day and age of advocacy. We respect individual differences, and reject “broad brush” policies that apply to most individuals with disabilities, but not all.  In our view, such an “all or nothing” approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk.

VOR’s advocacy – our walk to support our talk – is carried out at the state and federal levels by an army of members and volunteers, the vast majority of whom have family members with profound cognitive disabilities.

In state houses, court rooms, Congress and the media, we are doing all we can to help change the conversation away from ideological notions of what is best for all people with developmental disabilities, to what each individual needs.  We challenge laws, seek reforms and help families.

In short, VOR is doing all we can to answer what “Autism Daddy” says is the question many parents of autistic children and adults are afraid to ask, “Where Will He Live When We're Gone?”

VOR demands realistic answers to this question by working to ensure that the system is responsive to all needs, and working in coalition to expand housing and vocational options and challenging efforts at all levels, including our federal government, to eliminate specialized residential, vocation, and support services.

The need is significant. 3.5 million people with I/DD and autism are living with family caregivers (many who are elderly), there have been less than a quarter million out-of‐home residential opportunities funded in nearly 20 years,  and 268,000 Americans with I/DD are on waiting lists for services.

Does it make sense to eliminate specialized service options for people with profound needs because of someone else’s notion of “inclusion” and “community?”

VOR’s vision of the world puts individuals and their families in the driver’s seat, not federally-funded advocates that attempt to speak for you and your family.

VOR is 100% privately –funded, supported entirely by our members, primarily families like you.

We invite you to learn more about VOR at; and don’t forget out our complimentary subscription offer (to get signed up, send your request to

The more advocates we have speaking up in support of individual rights, family rights and common sense, the more successful we will be.


About the National Autism Network:

The National Autism Network is the largest online resource for the autism community providing a social network, nationwide provider directory, events calendar, discussion forums, autism news, expert written content and thousands of resources. Our mission is to unite and empower parents, providers, family members and individuals on the autism spectrum by providing a growing community rich in knowledge and expertise with a common goal of working together to make a difference in the lives of those affected by autism. We are all in this together as one community! 

Thursday, March 6, 2014

DD Services : Wayne County Michigan

Winter Extended
Ed Diegel, a parent from DD Advocates of Michigan, has been covering problems with the service delivery system for people with developmental disabilities in the Detroit/Wayne County area of Michigan for a long time. Recently, he has sent out email newsletters that include family testimonials to illustrate the problems that families experience. It is refreshing to see families willing to come forward to tell their stories. Experiences shared among families attempting to find appropriate services for their loved ones make us all feel less isolated and and a little less frustrated by the process.

As Ed says, in his first newsletter of 2014, "Without this exchange of stories we are easily treated as individuals with bothersome problems rather than as partners in a process that needs to be corrected; we end up feeling marginalized and being treated as if we are the problem rather than part of the solution…"

One theme running through the family testimonials is the insistence by Community Living Services (CLS), the largest provider network in the Detroit area, that clients adhere to the organization's ideological principles in selecting services, rather than allowing the needs and preferences of individuals and their families determine the services provided. While other agencies willingly support individual choice in skill building programs, sheltered workshops, and day programs, CLS has determined that these programs are off limits and not sufficiently integrated into the community, even though they are services covered by Medicaid. Many of the complaints have to do with the PEP Center in Livonia that provides services that CLS refuses to pay for, although other provider networks are more accommodating.

Ed says, "The PEP program has thrived over the recent past. Starting off in rented space on Five Mile it is now in its third building; each of the moves was required in order to support growing enrollment. It is the only day program that I consistently hear positive support for; admittedly, I travel in a small circle, but the observation is valid. They are doing something different to maintain enthusiasm and yet the largest MCPN in the county refuses to contract there."

This is from the Fosgard family:

"Cory has attended exercise class and other opportunities at the Pep Center in Livonia.  The staff is loving, caring and professional. They treat Cory with respect, and he enjoys his time there.  I had wanted to use this center for Cory’s respite dollars and for work opportunities after he graduates.  Unfortunately, Community Living Services will not allow his dollars to be used there.  They do not feel the program fits their 'vision'.   I believe their slogan, 'Your life your way' is hypocritical.  The life Cory enjoys is being denied by people who do not know him, or what is best for him.  Programs for persons with special needs are not one size fits all."

Ed comments: "The whole concept of Self Determination is to allow individuals to live where and with whom they choose and to spend their support money on the programs they believe will be most beneficial. In this environment an individual is allowed to hire support staff, choose a home to live in (as long as it meets certain CLS guidelines), budget home and food and entertainment dollars but then be told that, empowered with all these other life choices, they are too inept to choose an appropriate skill building program!"

From the Seizer family:

"…CLS will not let [our daughter participate in the PEP Center program].  This is in direct opposition to the slogan on their business cards which says:  'Your Life, Your Way'. That’s not what Kara is experiencing as a CLS consumer, she is being asked to set up her life 'CLS’s Way'…Also by forcing the family to change providers to get the pep center services, [we] will have to discontinue working with staff who have worked very successfully.

"It also is not healthy for Kara to be with a one on one direct hire person 5 days a week. She needs and wants the socialization and friendships in her life. We would like to stay with CLS and not have to switch to Synergy but in April it will be a year and it seems we are advocating but no one is listening."

From the Whalen family:

"This past year we have heard much about CLS and their push to be rid of day programs.  We originally joined CLS because their motto was 'Your Life, Your Way.'  Because their current philosophy is changing to your life, their way, we are in the process of switching Mike to Consumer Links."

[Wayne County residents having problems with Community Living Services can expect little help from the state's largest advocacy organization for people with DD, The ARC Michigan. The philosophy of CLS is identical to that of our state ARC. This is not surprising when one realizes that the Chairman of the CLS Board of Directors is Dohn Hoyle who is also the Executive Director of The ARC Michigan. This presents a conflict of interest when parents turn to the self-proclaimed defenders of the rights of their disabled children only to find the ARC is so deeply entangled with the largest provider network in the area.]

Anonymously, from another parent about heartbreaking conditions in a loved ones group home:

"My son and so many others cannot speak for himself.  He cannot tell me if they really went for a walk or if the staff was sound asleep.  Saturday I was told my son was going on a specific outing.  I know staff at the place where the outing was to be, he was never there.  If I say anything, nothing is done.  Per management I have no right to know if staff is talked to…

"It has been a difficult struggle.  Recently I have made many calls to various people.  Unless I want to file recipient rights, they do nothing.  I personally know other people who have made calls concerning a group home.  No change whatsoever. I had hoped the new 'Authority' [Detroit Wayne County Mental Health Authority] would open their eyes and see that things are not as they portray.  It is a sad situation.  Thank-you for a least letting me tell you about my concerns."

If you want Ed Diegel to send you his newsletters, contact him at . The newsletters are also posted on the PEP Center Website.

Tuesday, March 4, 2014

Standardized tests for profoundly disabled children : Accountability or lunacy?

According to an article in the Tampa Bay Times, "Testing for profoundly disabled children gets increased attention",  2/26/2014,  Florida parents  are having difficulty exempting their children with profound disabilities from taking state standardized tests: 

"While her 11-year-old son Ethan lay dying last month, Andrea Rediske had to convince the boy's school district he could not take the state tests.

"Ethan's teacher made daily visits to assess his progress — even when he was in hospice care.

"'Seriously?' Rediske wrote in a Feb. 4 email to Orange County School Board member Rich Roach. 'Why is Ethan Rediske not meeting his sixth-grade hospital-homebound curriculum requirements? BECAUSE HE IS IN A MORPHINE COMA. We expect him to go any day.'"

"The boy died three days later."

Parents and teachers of these profoundly disabled students - students who cannot see or communicate who are required to answer questions about pictures they are shown, for example - are getting increased attention from the Florida legislature. 

There is an alternate assessment that can be given to 1% of Florida's school population, that better measures progress for many students with disabilities. Even the alternate standardized test, however, does not correlate with the performance of students with profound disabilities. Many parents feel the testing is disrespectful of their children and irrelevant to measuring the benefits of their educational programs. A bill has been introduced in the Florida legislature that will make it easier to exempt these students from standardized testing. Consideration is being given to changing teacher evaluations to give teachers of disabled students some slack so that they are not penalized by their students' test scores. 

State Education Commissioner Pam Stewart defends the use of assessments for all students:

"'We all know that the only way to guarantee success in any endeavor is to set goals and measure our progress,' Stewart said. 'Measuring progress is key to successful learning, and I firmly believe that every child enrolled in a public school in Florida deserves the opportunity to have access to the best education possible. It would be a moral outrage to deny that opportunity to any child for any reason.'" 

Is standardized testing for these students accountability or lunacy? I vote Lunacy - 100%. And excuse me, while I go bang my head against a wall.