Michigan Update on Covid-19 Policies and More...

The ARC Michigan is the largest organization in the state advocating for people with developmental disabilities. As the parent of two sons with profound intellectual and developmental disabilities (IDD), I often disagree with the policies the organization has promoted over the years that ignore the real-life consequences of severe disabilities on the individual and his or her family. Along with many other disability advocacy organizations, the Arc attempts to promote public acceptance of disabled individuals by painting a rosy and unrealistic picture of life with a disability and applies it to all who fall under that category. I do give them credit, however, for making available information that individuals and families need to participate in effecting change in government policies.

The ARC Michigan e-newsletter update has timely information on legislation, other state and national policies, and recent court decisions affecting people with IDD. The archives for the newsletter are available on the website. You can also sign up to receive the newsletter by e-mail.
 
This is from the May 29, 2020, Government Affairs Update from RWC Advocacy, A Governmental Affairs Law Firm in Lansing, Michigan:

Emergency Authorities & COVID-related Legislation

The Michigan House of Representatives has yet to take action on Senate Bill 690, which provides $523 million in supplemental appropriations for Fiscal Year 2020 from the federal coronavirus relief fund for various purposes, most notable of which is the inclusion of a $3/hour increase for direct care worker wages. [emphasis added] We can likely expect the supplemental to move the first week of June.

[This appears on page 11 of the bill: DEPARTMENT OF HEALTH AND HUMAN SERVICES

Section 451. (1) From the funds appropriated in part 1 for pay enhancement for direct care workers, the department of health and human services shall provide sufficient funding to increase the wages paid to direct care workers described in subsection (2) by $3.00 per hour above the rates paid on March 1, 2020 retroactive to April 1, 2020 through September 30, 2020.
(2) The direct care wage increase shall be provided to direct care workers employed by the department of health and human services, its contractors, and its subcontractors who received a state-funded wage increase in April 2020. The total combined increase from the April 2020 wage increase and the wage increase outlined in this section shall be $3.00 per hour and shall be in effect from April 1, 2020 to September 30, 2020.
(3) A direct care wage increase of $3.00 per hour shall be provided to direct care workers employed by skilled nursing facilities, retroactive to April 1, 2020 and shall continue until September 30, 2020.
(4) Contractors and subcontractors receiving funding to support these pay enhancements shall be required to provide documentation of the wage increases provided pursuant to this section to the department of health and human services.
(5) Any payment enhancement above the hourly rate in effect on March 1, 2020 shall be of no effect in determining any employee's average compensation as provided by any contract or other provision of law...]
 
[The bill is 18 pages long and contains funding information on many other departments of state government. To find out more, read the bill.]
 
Stay Home, Stay Safe 

On Thursday, May 21, Governor Whitmer announced that she signed another iteration of the Stay Home, Stay Safe order – Executive Order 2020-96 – reaffirming the measures set forth in the previous order but taking the following new actions:

• Repeal of Executive Orders 2020-17 and 2020-34, which imposed a prohibition on elective dental, medical and veterinary services statewide, beginning on Friday, May 29 at 12:01 a.m.

• Allowing statewide reopening of auto showrooms, by appointment only, on Tuesday, May 26.

• Allowing statewide retail, by appointment only, starting on Tuesday, May 26. Stores will be limited to 10 customers at any one time.

• Allowing statewide gatherings of 10 people or less are allowed, but necessary health and safety measures should be used.
...

...Executive Authority Lawsuit
 
Judge Cynthia Stevens issued a ruling in the Michigan Court of Claims on Thursday, May 21 in Michigan House v. Whitmer upholding the Governor’s authority to declare a state of emergency under the Emergency Powers of the Governor Act of 1945. However, the judge also ruled that the Governor could not declare a state of emergency and disaster declaration under the Emergency Management Act of 1975 without legislative intervention.
 
[The Governor also has authority under the Emergency Powers of Governor Act of 1945 that does not require the intervention of the legislature.]

See more about Medicaid funding and the legislative attempt to direct funds from recent federal legislation to help the state get through the financial disaster that the corona virus has created.

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

Understanding Guardianship Part 2: The Michigan "Preventing Guardianship" Project, 2002 - 2004

Two of the goals of the 1998  Michigan “Task Force on Guardianship and Conservatorship…” were seemingly contradictory:  to reduce the number of unnecessary guardianships and  conservatorships and to guarantee “an appropriate number of qualified and concerned guardians”. The Task Force report did not include how the Task Force would ascertain that a guardianship was unnecessary or the number of guardianships that were actually found to be unnecessary in the course of reporting on guardianships in Michigan. 

State Courts complain about the lack of guardians available for people who have no willing friend or family member to take on the responsibility of guardianship, at which time the courts are impelled to turn to professional state or corporate guardians. It is my guess (I’m still looking for definite answers to this question), that there are more abuses in the public guardian system because the relationship between public or state guardians and their wards is less personal and is more fraught with conflicts of interest. Could it be that the aggressive approach of disability advocates to discourage potential family guardians from seeking guardianship has the effect of pushing courts into using less desirable professional and state guardians? By always speaking of guardianship in a pejorative way and by portraying the desire to protect a disabled family member with guardianship as wanting to take away the person's rights, advocates may exacerbate the problem of state courts not having enough guardians available to protect people who have no one else to help them. 

Here is an example of a campaign in Michigan that was supposedly launched to reduce guardianships but was turned on families and others close to people with developmental disabilities to shame them into never seeking the protections of guardianship.

Advocates for people with developmental disabilities, including Michigan Protection and Advocacy Services (MPAS) and the ARC Michigan, had been leading a long-term campaign to dissuade parents and other family members from using Michigan’s guardianship law to acquire decision-making authority for their developmentally disabled loved-ones who cannot make decisions for themselves. Some of the advocates’ activities were funded by the Michigan Developmental Disabilities Council with federal funds under the Developmental Disabilities Assistance and Bill of Rights Act (The DD Act).

From 2002 – 2004, the Michigan DD Council awarded a grant of $200,000 to Washtenaw Association for Community Advocacy (a local ARC chapter) and Michigan Protection and Advocacy Services for the “Preventing Guardianship” project. Although the stated purpose of the grant was to reduce the number of guardianships in Michigan, it was clear from the grant proposal that the project leaders philosophically opposed guardianship for people with developmental disabilities, even those with the most severe disabilities. Promoting their philosophy was central to the “Preventing Guardianship” project. 

Families were subjected to anti-guardianship activities, including public meetings that were supposedly held to give information on alternatives to guardianship, but were in reality for the purpose of proclaiming the evils of guardianship and shaming families into believing they would be depriving their loved ones of their civil rights by contemplating guardianship.  This is despite a Michigan guardianship law that protects developmentally disabled people from neglect, exploitation, and abuse. The law contains extensive protections against unwarranted and overly restrictive guardianships. By undermining state law and ignoring DD Act policy that makes developmentally disabled individuals and their families, not advocates, the primary decision makers, the DD Act-funded project may have resulted in making people with DD more vulnerable to neglect, exploitation, and abuse and families less equipped to protect them.

Public agencies and organizations were also targeted to persuade them to adopt practices and position statements that reject the use of guardianship and proclaim that it is a denial of civil rights. The expectation was that organizations that provide supports to people with developmental disabilities “…will change policies and adopt position statements that reflect an attitude and philosophy recognizing that guardianship is a denial of self-determined lives, civil rights, and that alternatives should be used.”

Parents and other family members were confused and often offended by the advocates unwillingness to acknowledge that some people with DD are not capable of making some or all decisions for themselves. Especially offensive was the accusation by advocates that family members seeking guardianship were allowing the worth of their loved-ones to be diminished by having a court declare their disabled family member incompetent. There were also attempts to exaggerate the difficulty of getting guardianship in the Probate Courts by statements from advocates who said the process was expensive, difficult, and exhausting and should be avoided at all costs. In fact, Michigan Probate Courts are usually family-friendly and most parents obtain guardianship without an attorney. Some Probate Courts offer help to families before a guardianship hearing that includes helpful references to the law and other educational materials on their Websites. As long as the person who needs a guardian is eligible for SSI, there are no court fees. 

Groups opposing guardianship by family members who accept federal funds under the DD Act with enthusiasm, usually reject DD Act policy that makes developmentally disabled individuals and their families, not advocates, the primary decision makers regarding the services and supports they receive. Ignoring DD Act policy and undermining state law that protects developmentally disabled people from neglect, exploitation, and abuse should not have been rewarded with DD Act funds

Michigan’s law for guardianship for people with developmental disabilities: start here and navigate forward to other sections by clicking on the navigation arrow. 

Washtenaw ACA on rate reductions for self-determination direct care workers

On July 1, 2015, Kathy Homan, President and CEO of Washtenaw Association for Community Advocacy, commented to the Washtenaw County Board of Commissioners regarding the decision by the Washtenaw Community Health Organization (WCHO) to reduce the hourly rate of pay for direct care workers under self-determination living arrangements:


“In May of this year, CSTS reduced the hourly rate of pay for Self-Determination budgets and removed all additional line item allowances from all [Medicaid] waiver recipients using self-determination. This reduction has decreased, if not ceased, the ability for people with developmental disabilities to be included in their community. The rate reduction was done with no input from the community and in violation of The Centers for Medicare and Medicaid (CMS) Budget Authority Process in the Habilitation Supports Waiver application, as stated in the letter from Michigan Department of Health and Human Services that was sent to the WCHO on June 4, 2015. I spoke with CMS after receiving a copy of this letter and confirmed that the violation to the Authority Process also included all other Home and Community-Based Service Waivers. This same letter stated that 'As a result, we are requesting that the WCHO reverse this decision immediately and retroactively to May 15, 2015 for all SD and choice voucher arrangements effected by this action.'

"The WCHO’s response to MDHHS, dated June 15, 2015 states '1. In coordination with the Washtenaw CSTS Clinical Team, we are collaborating with the individual and/or guardian to review the Individual Plan of Service (IPOS) and the Self-Determination budget. Upon review with all parties, the IPOS will be reviewed and signed off on by the individual and/or guardian and the CMHSP.' '2. Through the completion and signature on the updated IPOS, each individual and/or guardian will be provided Adequate Notice of Rights.' It also states that the WCHO will attempt to negotiation a solution locally. Should a solution become unattainable, WCHO will ensure individuals are provided assistance with filing a Medicaid Fair Hearing. We believe the WCHO response does not comply with the letter from MDHHS and is considered by some families as a bullying tactic.

"Self-determination is a policy through the public mental health system that is to be made available to any person receiving services through PIHPs and CMHSPs. The five principles of self-determination are Freedom. . . to plan a real life, Authority. . . over your resources, Support. . . . for building a life in your community, Responsibility. . . to the wise use of funds, and Confirmation…of the important roles that individuals must play in a designing systems.
 
"In October of this year, the Washtenaw County Board of Commissioners will have more oversight for CSTS. We ask that you include people with developmental disabilities and their families on the Community Mental Health Board so nothing again is ever decided about them without them." [emphasis added]

[The MDHHS is the Michigan Department of Health and Human Services, a new department that merges the old Department of Community Health and the Department of Human Services.]

Federal agency allows community-based services and housing on the grounds of an institution

From the VOR Weekly News Update for April 24, 2015
 
North Dakota recently received approval from the Centers for Medicare & Medicaid Services (CMS) to provide Medicaid Home and Community-Based Waiver funded residential housing and day services on the grounds of the North Dakota Life Skills and Transition Center (LSTC), a state funded intermediate care facility (ICF/IID). [IID = Individuals with Intellectual Disabilities]
 
Federal approval for housing and day services on the ICF/IID campus came after a heightened scrutiny review by CMS, as required by the federal "community" regulation which requires all HCBS-funded services meet specific criteria. The proximity of the housing and day services on the campus of an ICF triggered "heightened scrutiny."
 
This is believed to be the first ruling under a heightened scrutiny review. The North Dakota Protection and Advocacy Project, North Dakota Center for Persons with Disabilities, and The Arc of North Dakota sent a letter registering their significant upset and opposition to the ruling and for not being involved as “stakeholders.”

Read their letter to CMS here.

**********************************************

From Questions and Answers Regarding Home and Community-Based Settings

[page 7] Question: Are settings on the grounds of or adjacent to “private” institutions considered not to be home and community-gassed (HCB)?

Answer: It depends. Settings that are on the grounds of or adjacent to a private institution are not automatically presumed to have the characteristics of an institution. However, if the setting isolates the individual from the boarder community or otherwise has the characteristics of an institution  or fails to meet the characteristics of a home and communit-based setting, the setting would not e considered to be compliant with the regulation. States will need to assure that these settings fully comply with the requirements…to qualify for Medicaid reimbursement under 1915(c), (i), or (k) as noted in the transition plan. A state’s assessment of settings that isolate should be informed by the public comments received prior to submission of the transition plan. Also, states may elect to adopt more stringent settings characteristics that would not allow a setting to be on the grounds of a private institution….

Read more from CMS on the new rule here.

Bringing Home the Bacon

Is there such a thing as a multi-Billion dollar NONprofit? Yes, there is, and one of them is The ARC, the country's largest advocacy organization for people with developmental disabilities. 

An article in Fusion, a newsletter from the national ARC for September 29, 2014, covers a recent report from the National Center on Charitable Statistics of the Urban Institute. Based on a year's worth of data compiled from IRS 990 forms (the forms that most nonprofit organizations file annually with the IRS),  The ARC and its chapters throughout the United States have brought in $4.02 Billion in Gross Receipts, "…including $3.83 Billion in Total Revenue, $2.76 Billion in Program Service Revenue, $989 Million in Contributions & Grants (includes Government Grants) and $20 Million in Investment Income."

"Of the Total Contributions, Gifts and Grants, $145 Million is from individuals, foundations and corporations while $847 Million is from government…"

That's a lot of money! Of The ARC's total revenues of $3.83 Billion, $847 Million or 22% came from government, and  $145 Million or 3.8% from individual donations.

One can learn a lot about an organization from its IRS 990 forms, including its revenues, expenditures, and how much it pays its highest paid employees. Guidestar is a good place to start looking for information on nonprofit organizations. Registration is free. Here is Guidestar's Frequently Asked Questions about form 990.

Read the full article on The ARC's finances here.