Covid-19 Michigan Update

When the news changes from hour to hour and it all seems important and noteworthy, a news update on Corvid-19 in Michigan may be an exercise in futility, but I will give it a try. There are tidbits from the news that relate especially to the families I know who have family members with IDD (Intellectual and Developmental Disabilities) and may have a lasting impact, but that is anyone’s guess.

Temporary Family & Visitor Restrictions at Michigan Medicine

If you or a loved one needs clinic services or hospitalization at Michigan Medicine at the University of Michigan in Ann Arbor, “Temporary Visitor Restrictions” have been issued. All routine visiting is temporarily suspended. Non-routine visiting, however, is in place in special circumstances. Here a few of those special circumstances:

Pediatric inpatients - One adult primary caregiver for neonatal and pediatric patients. It is expected that if a caregiver will be present, one caregiver be designated for the entire stay to support the child’s medical care.

Adult developmentally delayed inpatients - Patients with developmental delays may have one visitor (where this one visitor provides safety and is key to the patient’s care).

Adult and pediatric inpatients at end of life - Up to two visitors at a time for patients at end of life.

Outpatient clinics - One visitor is allowed to accompany each patient to an appointment, unless an additional aide or assistant is required.

How bad can the Covid-19 threat get for vulnerable populations? 

Here is one example from the Detroit Free Press, “31 residents, five staff test positive for COVID-19 at west Michigan nursing home” by Christina Hall, 3/31/20.

“Kent County [the Grand Rapids area] Health Department spokesman Steve Kelso confirmed the numbers provided by the facility and said the first positive case was reported Friday. By Tuesday, there were 36 people sickened in the 77-bed facility.” At the time the article appeared there had been no deaths at the nursing home.

On a more hopeful note, this story by John Wisely appeared in the Detroit Free Press on 4/2/20: “Ann Arbor teachers, students use 3D printing to make face shields for health care workers”.
 
"'I got multiple emails and texts from different groups that I'm attached to,' said Tom Pachera, who teaches design, technology, engineering and prototyping at Skyline High School in Ann Arbor. 'A couple of our robotics kids and several of my students asked if we could get the printers, our 3D printers from our different labs in our schools.'"

In a collaboration between teachers, students, and the Ann Arbor community, face shields are being put together using a 3-D printer and plastic sheets that teachers used to use with overhead projectors.
 
“The teachers aren't the only ones to get involved in it. Ian Steiner, a 16-year-old sophomore at Skyline High got involved through a family friend, Kevin Leeser, a disaster response nurse who formerly worked at the University of Michigan hospitals. 

“Leeser knew health care workers were running low on protective equipment and wanted to help. He'd gotten a 3D printer as a hobby last year and decided to deploy it to make masks. He planned to use the printer to make a plastic headband that would hold the shield in front of the health care worker's face. "…

“Leeser said the project has been fun, but it's only intended to be short term. He suspects that a company that has machinery to make injected molded plastic parts will being producing them at a much faster rate than the 3D printers can spit them out.

"'It's a faceless war and it's kind of cool that you do have people who have the time right now,' he said.”

Susan Tompor, a columnist for the Detroit Free Press, gives advice on employment, money, and other financial matters.
 
From “FAQ: When will I get my stimulus check? Who gets one? What about tax returns?” Susan Tompor notes that,

“In a key development, the U.S. Treasury Department and the IRS late April 1 announced that Social Security beneficiaries who are not typically required to file tax returns will see payments for the stimulus automatically deposited into their bank accounts. No action or simple form is needed, according to the latest guidance.”

Join Susan Tompor at 12 p.m. Monday for answers to questions about stimulus checks, taxes
 
"Do you have questions about federal stimulus checks, taxes and unemployment? Free Press Personal Finance Columnist Susan Tompor will be on hand to answer your financial questions during the coronavirus crisis.
 
"Susan will start taking your questions at 12 p.m. on Monday, April 6. Leave your question in our comments section or by clicking this link.
 
In this article, “Michiganders to Gov. Whitmer: Fix the damn unemployment website" by Frank Witsil , 4/2/20, has some advice to calm down people who are frustrated in the extreme: 

“Labor officials respond that it's not a matter of indifference, it's the situation. Michigan's unemployment claims ending March 28 topped 311,000, more than doubling from 128,000 the week before.”…

“Many states are handling an unprecedented number of claims, and, in Michigan, many claims are going through without any problems, filers acknowledged. It helps that Michiganders can file online at any time — day or night.

“The problem, however, comes in when a caller encounters a glitch or has a question"…

“Normally, unemployment officials said, glitches and questions can be handled by a call center that has been shut down because of the efforts to keep people from gathering in groups and at home so they don't catch the virus.”

Abelone Kelley April 05, 2020 0

Yoo-hoo, Mr. President! “That Woman Governor from Michigan” is my Governor and we need all the help she can get!

So what is this I hear about hurt feelings because some governors don’t show enough appreciation for the help the federal government is offering them? Did I also hear that the Vice President was instructed to not return phone calls to mean girls and boys who somehow managed to get themselves elected governors of some very important states but refuse to play by the rules of this particular game? And once the President remembered my Governor's name (Gretchen Whitmer), he couldn't resist making a little joke about her by calling her Gretchen "Half" Whitmer. Get it? That should go over well with the disability community.

Let's get real here. I have two sons with profound intellectual and developmental disabilities who are hunkered down in their group home waiting for a time when it will be safe to venture out without becoming the latest victims of Covid-19. All six residents of the group home have multiple disabilities that put them in a high risk category for “bad outcomes” (including death) if they contract the disease. As aging family members, my husband and I are in a similar risk category and have to curtail visits to see them. We don’t like losing the ability to see them and their caregivers first-hand, but we stay in touch by phone.

Our sons receive good care from the group home staff. But even in relatively good times, the continued availability of that care is precarious due to our chronically underfunded mental health system. Their direct care workers are overworked and underpaid, but nevertheless perform difficult jobs that often go unrecognized for their importance. My sons' need for 24/7 care and supervision is dependent on the group home receiving adequate funding and support, paid for mostly through Medicaid and Social Security benefits.

The group home is not a medical facility, so there are limits to how much medical intervention can be done by staff. We are fortunate, however, to live in the Ann Arbor area with at least two major medical systems and specialists who accept Medicaid. My older son is a “frequent flyer” in the Emergency Room due to a seizure condition that is hard to control. Every two months or so he ends up in the ER for treatment and observation.  Occasionally he is hospitalized for pneumonia or other acute medical problems.

My sons cannot afford to see their medical facilities collapse under the strain of the Covid-19 pandemic. Medical support personnel need personal protection equipment to keep themselves from contracting the virus and passing it on to patients. Patients rely on the availability of ventilators and other medical treatments as we prepare for an onslaught of cases that require hospitalization. This is highly predictable, given what we know about the disease already. I need some reassurance here, too, that a trip to the ER will not result in a death sentence for either of my sons if the virus is inadvertently spread in the hospital. We continue to lack sufficient testing to keep track of the disease and eventually to identify direct care workers who can work safely with people as vulnerable my sons and their friends at their group home.
 
I don’t have time to spend on trying to figure out who said what to whom and I am sure my sons don’t care. Believe me, this is a very scary time for us all and we are relieved to hear that Michigan will be getting at least some of the aid the Governor asked for. My expressions of appreciation will go first to those who deserve it the most: direct service providers for people with severe disabilities, the doctors and nurses who are on the front lines in fighting this pandemic, and all the people who support them in their effort to keep the rest of us alive and well.

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Here is a movie to watch while you are self-isolating: Yoo-hoo, Mrs. Goldberg. It is a documentary about the famous comedian Gertrude Berg who starred in her own TV show in the 1950's and sold Sanka coffee on the side.

Abelone Kelley March 29, 2020 0

Michigan: Radical proposals to change Medicaid services for IDD put our loved one's right to services at risk

This is from One Voice – A Michigan Parent/Family advocacy organization in support of individuals with Intellectual and Developmental Disabilities. 

Proposals from the Michigan Department of Health and Human Services (MDHHS) are not much different than the attempts by the previous administration to shift Medicaid funding away from Community Mental Health agencies to Medicaid Health Plans and to privatize services. Medicaid Health Plans would like to be in control of the Medicaid budget for people with developmental and other disabilities, but they have little experience with providing the social services, residential services, and other specialized programs necessary for the survival of the IDD population. 

Most disturbing to me is the desire to base services on the Supports Intensity Scale (SIS) questionnaire. Years ago, the state DHHS clarified that this assessment tool is not appropriate in all cases: “The SIS should be used to enhance and support the person-centered planning process. As with all assessments, the SIS is voluntary and should not be tied to determinations of medical necessity and the authorization of behavioral health services. Supports and services cannot be denied, reduced or discontinued if a consumer and/or guardian refuse to cooperate with the assessment process.” 

For my sons, who are profoundly intellectually and physically disabled, the SIS assessment misses the boat entirely. For one thing, it assumes that the only worthy goal is to provide supports so that everyone with IDD can live in the community just like everyone else who is not disabled. I can assure you that for my sons, "living just like everyone else", is a fantasy. Helping them to have a quality of life worth living entails acknowledging their extensive medical and physical needs that go far beyond what they are likely to ever find in "the community".

When my son Ian was assessed using the SIS at the age of 30, one of the questions asked was what supports are necessary to allow Ian to "date" like a typical 30-year old man. He cannot walk, talk, or do anything without total assistance. He is nevertheless a charming, lovely man, but we will never know what he thinks about "dating" or anything else in any specific way. An answer that indicated that "dating" might not be possible was not allowed. Indulging this fantastical way of thinking does not help Ian. Acknowledging that people with IDD have a wide spectrum of need and allowing for individual differences by providing a full array of services and residential options will help.

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Provided by One Voice –A Michigan Parent/Family advocacy organization in support of individuals with Intellectual and Developmental Disabilities Email us at: onevoicemi@gmail.com Bob Pierce, Chair of One Voice

ACT NOW To save our loved one’s supports and right to services. 

Radical changes are being proposed at the State level for Medicaid Services for our I/DD family members. Extraordinarily incomplete detailed information has been made available to the public. The announced timeline is to have the changes implemented in 2022! Here is a summary of our understanding and take on the issue. 

 MDHHS is moving toward a model that calls for Specialty Integrated Plans that combine behavioral and physical health plans under one umbrella that appears to most likely place Medicaid under private control.

Terms like “Most things stay the same” and “Ability to pick your plan (including a public-led option if you want)” are in Director Gordon’s public sales pitch for this revolutionary change.

The key to changes is the part about opening up the Mental Health Code. The Code currently says services are based on the Person Centered Plan (PCP). That Section will likely be removed, and services will be based on a Supports Intensity Scale (SIS) questionnaire. Questions can be misleading, and numbers manipulated to limit what services are legally protected. We cannot let the SIS dictate the needs of our loved ones.

Nowhere has anyone publicly detailed what is failing in our existing systems or how to improve these shortcomings. It is our belief that this is simply a plan to eliminate financial risk for the state, reduce support and services for our I/DD family and ultimately privatize Community Mental Health services.

Other states have implemented similar programs. Here are a few samples of press headlines that reflect the “success” of these changes:

North Carolina gets a “F” on how equally it treats mental and physical health issues – North Carolina Health News 1/15/19

Medicaid changes hit mental health services in state; payment cuts cited as providers shut – Arkansas Democrat Gazette 12/9/2019 

We must send a loud and clear message to Governor Gretchen Whitmer - NO Specialty Integrated Plans (SIPs) and NO opening of the Mental Health Code! Slow down this process now!! 

Please contact the Governor now! Time is of the essence. State Representatives, State Senators and your local County Commissioners need to hear our voices.

Governor Gretchen Whitmer

P.O. Box 30013
Lansing, Michigan 48909

517-373-3400
517-335-7858 (Constituent Services)

Governor Whitmer
https://govenorsoffice@mich.gov https://MDHHS-futureofbh@michigan.gov State Senator https://www.senate.michigan.gov/fysbyaddress.html

State Representative
https://www.house.mi.gov/mhrpublic/frmFindaRep.aspx

Washtenaw County Board of Commissioners
https://gisappsecure.ewashtenaw.org/public/BOC/

References:

https://www.arkansasonline.com/news/2019/dec/09/medicaid-changes-hit-mental-health-serv/

https://www.northcarolinahealthnews.org/2019/01/15/north-carolina-gets-a-f-on-how-equally-it-treatsmental-and-physical-health-issues/

Press release announcing the plan.
https://www.michigan.gov/som/0,4669,7-192-29942_34762-513879--,00.html

MDHHS Director Gordon’s slide presentation 

http://www.house.mi.gov/hfa/PDF/HealthandHumanServices/ DHHS_Subcmte_Testimony_MI_Behavioral_Health_System_New_Approach_12-4-19.pdf 

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See also, 

"Families providers ask tough questions on plans to integrate Medicaid mental health" by Jay Greene from Crain's Detroit

The DD News blog: Managed care and privatization create a crisis in Iowa

Abelone Kelley February 21, 2020 0

Happy Birthday Ian B.!

Ian does cute and handsome

Happy 35th, sweet boy!

Abelone Kelley January 12, 2020 0

Disability Wrongs: Advocacy gone awry

This video is from ACCSES, an organization representing disability service providers including providers of work centers (sheltered workshops). On 7/25/18, the organization held a Capitol Hill Briefing in defense of a broad range of work settings for people with disabilities including work centers for people who would otherwise be unable to compete for employment. Self-advocates who participate in these work programs were scheduled to speak, but they were shouted down and the meeting disrupted by other self-advocates from disability organizations with opposing views. 

According to ACCSES, this is what happened:

“Despite what disability policy seems to indicate: People with disabilities are not a monolithic group. Rather, people with disabilities are individuals, with the same right to choose where they want to live, work, and thrive as anyone else. That basic civil right to live life with dignity and respect is being subsumed by feel-good laws that do not benefit many individuals, and advocates who support those laws over individual rights. That’s the rub. Right now, current and proposed laws and regulations, as well as policymakers, agencies, and some advocates—even those with good intentions—are putting a broad range of employment, residential, and community support options for people with disabilities at risk. In doing so, they are taking away the civil rights of individuals with disabilities.

“That was never made more clear than on July 25, 2018, when a dozen people with disabilities, some of whom work on the Capitol campus and others who traveled all the way from the middle of the country, wanted to share their stories of why their jobs matter. Instead, they were shut down by advocacy groups that crashed an ACCSES Capitol Hill briefing and frighteningly shouted over the self-advocates with disabilities who were scheduled to speak. The Capitol police had to be called, the individuals who came to speak never got to address the audience in the room. This is where current disability policy has led, not to increased opportunity and respect, but to a concerted effort to take away the civil rights of individuals with disabilities by limiting their choices. It must end. Individuals must be allowed to live, work, and thrive in settings that best meet their needs – not the needs of others.” 

The organizations taking the lead in these disruptive activities were ADAPT and NCIL, the National Council on Independent Living. They put out their own version of events on 7/25/18, “Disability Rights Groups Protest Provider Efforts to Continue the Exploitation and Isolation of People with Disabilities”.

The ACCSES briefing included support of a House bill called the "Workplace Choice and Flexibility for Individuals with Disabilities Act". You can read the bill, H.R. 5658, in less than 5 minutes and see for yourself if it has anything in it that would produce the cataclysmic results that ADAPT and NCIL are predicting. There is nothing in it that would limit or impede the opponents of the bill to receive the employment services in integrated, competitive work settings that they say they want. In the ADAPT/NCIL hyperbolic assessment of the bill, they claim that “This bill resurrects walls of exclusion by segregating people with disabilities both socially and economically, allowing service providers to keep disabled people in workplaces that are isolated from the rest of society, and to pay those workers pennies on the dollar for the value of their work.” 

In the ADAPT/NCIL version of events there is no mention of disability self-advocates and their families supporting the bill who believed they had a meaningful opportunity to express their support, only to be shouted down by other advocates from opposing advocacy organizations who claim to represent everyone with a disability. One of the ADAPT organizers, Anita Cameron, is quoted as saying, “They need to hear from disabled people, they need to hear about the lives we want to live and the communities we want to build. 28 years after the signing of the ADA it is insulting that any organization would pretend to know our needs better than we do.” This was not intended ironically, even as the demonstrators were shouting down other people with disabilities and disrupting the meeting to the extent that the police had to intervene and make arrests. 

Another well-known advocate supporting the demonstrators was Ari Ne’eman, a founder of ASAN, the Autistic Self Advocacy Network, and a former member of the National Council on Disability. He is currently an advisor to the American Civil Liberties Union on disability policy and Medicaid. He is seen sitting in the audience holding up his cell phone at 2:37 in the ACCSES video. He was covering the event by tweet, saying among other things that this was a “Historic event”. He makes no reference to others with disabilities who have opposing views to his own. 

No one deserves to be silenced by the kind of bullying displayed by the aggressive tactics of ADAPT, NCIL, and their supporters.

This whole debacle was exacerbated by disability organizations using the royal “we” when they claim to represent everyone with a disability. I found a word for it, something to add to the multitude of “isms” and other terms that get thrown around and at people who one disagrees with: Nosism. According to Wikipedia, Nosism, from the Latin nos, "we", is the practice of using the pronoun "we" to refer to oneself when expressing a personal opinion. At least “we” learned something new from this tawdry event.

Abelone Kelley January 09, 2020 0

Public forums on the future of Michigan's behavioral health system (a.k.a. Community Mental Health)

This is a notice from the Michigan Department of Health and Human Services (MDHHS) inviting anyone interested in the future of the behavioral health system (Community Mental Health), including Medicaid services for people with intellectual and developmental disabilities, to attend a forum to voice your opinion.

Here is the notice followed by links to background information and my personal opinion about the cluelessness of state officials regarding the problems in our system of care and services.

MDHHS PUBLIC FORUMS:

THE FUTURE OF BEHAVIORAL HEALTH IN MICHIGAN

Please join the Michigan Department of Health and Human Services (MDHHS) for a conversation about the future of behavioral health in Michigan.

In December 2019, MDHHS outlined a vision for a stronger behavioral health system that integrates specialty behavioral health and physical health services. If you are served by Michigan’s Medicaid-funded behavioral health system or are the family member of a person served, we want to hear from YOU.

MDHHS is hosting five public forums throughout the state and online in early 2020. Department leadership will be in attendance to further discuss the vision, answer your questions, and listen to your feedback. Please join us!

Detroit: January 8, 2020, from 5:00—6:30 p.m.
Cadillac Place, 3044 W. Grand Blvd
Conference Room L-150

Grand Rapids: January 9, 2020, from 5:00—6:30 p.m.
Grand Valley State University L.V. Eberhard Center, 
301 W. Fulton, Room 201

Marquette: January 22, 2020, from 5:00—6:30 p.m.
Marquette Senior High School
1203 W. Fair Ave
Little Theater

Saginaw: January 30, 2020, from 5:00—6:30 p.m
Saginaw Valley State University, Gilbertson Hall, 
7400 Bay Road
Ott Auditorium

Virtual Forum: February 6, 2020, from 5:00—6:30 p.m.

The link for this event will be shared on www.Michigan.gov/FutureOfBehavioralHealth
in late January.

To learn more about the Department’s vision, please visit www.Michigan.gov/FutureOfBehavioralHealth. 

If you cannot attend an event, we would still love to hear from you. You can email your feedback to FutureOfBH@michigan.gov.

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Speech by Robert Gordon, Director of MDHHS, to the Community Mental Health Association of Michigan

The vision MDHHS is proposing

Section 298 Initiative The 298 Initiative has been abandoned, but it looks like current proposals by the state are trying to resurrect it. 

For many years, Medicaid Health Plans, both for profit and nonprofit, have been trying to get their  hands on Medicaid funds for behavioral health services (CMH) with promises that they can do it better and for less money than the public agencies that most people rely on. For some very good reasons, people don't believe them. Medicaid Health Plans do not have experience providing the social service supports people with IDD and other disabilities need to survive (housing, case management, caregiving, family supports, health maintenance, etc.). When medical health systems are faced with limitations on funding through a managed care system, they naturally turn to denying and limiting services to the people they are supposed to serve.

Let's not kid ourselves.The community mental health system leaves much to be desired with its inability to recognize or serve the full continuum of services that are needed by this diverse population. 

The State's proposals for reforming the behavioral health system (again) do not tell us what they are trying to reform other than a system of financial management for Medicaid funds. It seems to me this is starting at the wrong place again with the wrong people.

If you want a say in the future of Behavioral Health, tell the MDHHS what you know and what they need to know to do a better job. Lead with that, and don't let the state's proposals be the only thing you respond to.

Abelone Kelley January 07, 2020 0

More comments on non-competitive employment for people with intellectual and developmental disabilities

Testimony from 18 Missouri, an organization representing 6,000 families in support of people benefitting from non-competitive employment.

See more on Youtube.

Today, 12/15/19 is the last day to submit comments to the U.S. Commission on Civil Rights Regarding Section14(c) of the Fair Labor Standards Act. 14(c) allows employers to pay people with disabilities less than minimum wage based on their individual abilities and needs. Protections in the law make acceptance of non-competitive employment voluntary. Other employment opportunities are available for people with disabilities who want competitive employment for at least minimum wage through Vocational Rehabilitation agencies and supported employment services. 

Submit comments by email here, subminimumwages@usccr.gov . 

Although comments are due today, anyone can comment any time to the US Commission on Civil Rights.

The following are excerpts from a letter dated 11/14/19 from Jill Escher, President of the National Council on Severe Autism, to the US Commission on Civil rights regarding “non-competitive employment options with severe cognitive, functional and behavioral disabilities”. Read the full text of the letter here.

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National Council on Severe Autism
PO Box 26853
San Jose, CA 95159
info@ncsautism.org
ncsautism.org
November 14, 2019 

United States Commission on Civil Rights
Via email: subminimumwages@usccr.gov 

...We fully understand and appreciate that some individuals with disabilities have been paid less than their productivity warrants—clearly, justice requires that those individuals receive competitive wages. However, a substantial portion of the disability sector—namely, those with substantial cognitive and behavioral impairments who lack the ability to engage in work at a competitive level—require noncompetitive, highly supported options…. 

All Americans should have access to work, but elimination of 14(c) de facto excludes our severe ID population from the workforce based on the fantasy that all intellectually disabled adults could achieve competitive employment. A few more key points: 

• Given the staggering increase in the population with severe autism, we see a clear imperative to create vastly more, not fewer, options for day programming and supported forms of employment. …We need to maximize their person-centered options, including work that pays special wages based on less-than-competitive productivity.
• Subminimum wage work is but one benefit accruing to the significantly disabled clients. …A standard job supervisor is unlikely to treat seizures, change diapers, or handle getting punched or scratched, to put it mildly. The extremely valuable, though non-monetary, therapeutic dimensions should be considered before over-simplistically labeling subminimum wages as discriminatory. 
• 14(c) programs serving the significantly intellectually disabled provide a protected form of employment unavailable in the free market...the employee’s needs comes first, and profitability is not the prime endpoint. The nonprofit work is typically tailored to the particular skillset of the worker, a customization unavailable in the free labor market where individuals are expected to conform to pre-established performance standards...Disability advocates often accuse 14(c) wage programs of exploiting or abusing their disabled workers, but for severely challenged adults, the opposite is almost always true— the programs often protect clients from exploitation and abuse by offering protected employment. 
• No person with a disability is forced into 14(c) work, and wages are set carefully. … 
• Most workers with disabilities, for example physical disabilities, are already in the competitive market...As Harris Capps, the father of Matthew, who loves his job in an Ohio work center, states, "If a higher functioning individual is able to get a job providing a mandated minimum wage, surely, they already have the minimum wage law in effect to protect them." 
• When non-competitive workshops close, participants often end up idle at home, lonely and unemployed, or if they work at all, with decreased job hours and decreased total wages. Where is the data suggesting better outcomes for the severely disabled who are denied the opportunity to work? We have seen none. Slashing their jobs, leaving them to languish at home, detached from any community of peers, with no viable alternative discriminates against our most vulnerable. The ostensible “liberation” of requiring competitive employment obviously strands our most vulnerable citizens. At a minimum, 14(c) must remain intact for our subset who lack capacity for competitive employment. 

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Fact Sheet on Subminimum Wages for People with Disabilities

The DD News Blog testimony to the USCCR

Abelone Kelley December 15, 2019 0