Michigan's Children's Special Health Care Services expands health care for adults

This is from the Michigan Department of Health and Human Services:

FOR IMMEDIATE RELEASE: Feb. 2, 2024
CONTACT: Lynn Sutfin, 517-241-2112, SutfinL1@michigan.gov
MDHHS Children’s Special Health Care Services
 expands to cover young adults until age 26

LANSING, Mich. – Young adults with special health care needs in Michigan will have increased access to care thanks to the expansion of the Michigan Department of Health and Human Services (MDHHS) Children’s Special Health Care Services (CSHCS) program.

Through a FY24 budget recommendation by Gov. Gretchen Whitmer that was approved by the Michigan Legislature, coverage was extended from age 21 to age 26. This expansion is expected to provide coverage to an additional 9,000 individuals. 

MDHHS began processing enrollments for this newly eligible population last month.

“Governor Whitmer continues to focus on improving public health and investments to make Michigan communities healthier,” said MDHHS Director Elizabeth Hertel. 

“Expansion of Children’s Special Health Care Services will provide access to needed health services and specialty care for young adults with chronic or complex health conditions as they are more likely to have challenges accessing care.”

Children’s Special Health Care Services is a program that assists families with a child or young adult with a chronic or complex medical condition. It covers more than 2,700 physical conditions. In addition, it provides coverage to clients regardless of age with cystic fibrosis, hemophilia or sickle cell disease. In Michigan, more than 40,000 individuals, primarily children, are enrolled in the program.

“On behalf of Michigan’s epilepsy community, we are excited and grateful to see extended coverage of the Children’s Special Health Care Services program to age 26,” said Brianna Romines, Epilepsy Foundation of Michigan president. “Many youth with epilepsy receive coverage through this program and while this program previously ended at 21, managing their epilepsy and seizures continues on. We know that by extending this program, more youth with epilepsy and many other chronic medical conditions will have access to the comprehensive care needed to best manage their condition and live their best life.”

MDHHS encourages young adults with special health care needs to apply for coverage by contacting their local health department for assistance.

“The Children’s Special Health Care Services Detroit Local Health Department Office is excited and thrilled with the expansion of coverage for individuals with eligible chronic medical conditions up to the age of 26,” said Crystal Hepburn, BSN, RN, CCM, Children's Special Health Care Services program manager, Detroit Health Department. “This expansion continues to assist our program in addressing the health disparities within our community. Having equitable, accessible health care for our clients aids in the appropriate management of their diagnosis and affects the quality of life, increasing the opportunities for positive health outcomes. By increasing access to care and coverage, it decreases the financial stress and burden for clients in managing their chronic medical condition. We are delighted that our families will continue to have the wonderful support that they have come to know within our local health department until their family member reaches age 26.”

For more information on Children’s Special Health Care Services or the enrollment process, individuals should contact their local health department, the Children’s Special Health Care Services Family Phone Line at 800-359-3722 or on the MDHHS website.

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General information about CSHCS

Michigan primary election: February 27, 2024

January 21, 2024

Voter information is available on the MI Secretary of State Website. The Republican primary election is more contested this year than the Democratic primary and a bit more complicated. You can read about that here.

Register to vote: You can register to vote on-line up to 14 days before the election. After that, for this election, you can register in person up until and on Election Day at your city or township clerk’s office. Michigan does not register voters by party affiliation. When you vote in a primary election, you need to pick a ballot for one party with the names of candidates running on that party’s ticket.

To be eligible to register to vote you must be:

   •    A Michigan resident (at the time you register) and a resident of your city or township for at least 30 days (when you vote)
    •    A United States citizen
    •    At least 18 years of age (when you vote)
    •    Not currently serving a sentence in jail or prison

Proof of residency:

You must show proof of where you live. Documents must have your name and current address. You can show a digital copy of documents. Acceptable documents include:
    •    Michigan driver’s license or state ID
    •    Current utility bill
    •    Bank statement
    •    Paycheck or government check
    •    Other government document

Absentee Voting:

From the SOS Website: “All registered voters in Michigan can now vote using what’s called an absentee ballot. You don’t need an excuse or a reason. You can vote by absentee ballot through the mail, without leaving your home. You can also go to your city or township clerk’s office or drop box to return your absentee ballot, which we recommend if you are returning a ballot within two weeks of election day, in order to avoid possible postal delays.”

From the Detroit Free Press, “Michigan presidential primary 2024: Election Day date, how to vote, candidates” by Arpan Lobo, 1/17/24:

...Key dates, deadlines for Michigan presidential primary

While the primary day itself is Tuesday, Feb. 27, Michigan also has early voting and absentee voting. Here are some key dates to know for the presidential primary:
    •    Sunday, Jan. 28: Communities may begin allowing early voting. Michigan election law requires communities to hold at least nine days of early in-person voting, but communities can choose to hold up to 29 days of early voting. To find out your community's early voting schedule, contact your local clerk's office, which can be found online at the Michigan Voter Information Center at michigan.gov/vote.
    •    Monday, Feb. 12: Deadline to register to vote online or by mail and be eligible to vote in the Tuesday, Feb. 27, presidential primary.
    •    Tuesday, Feb. 13: On this day and afterward, people registering to vote in the presidential primary must do so in person at a local clerk's office with proof of residency.
    •    Saturday, Feb. 17: Communities must begin allowing early voting.
    •    Friday, Feb. 23, at 5 p.m.: Deadline to request an absentee ballot online or through the mail.
    •    Sunday, Feb. 25: Last day of early voting.
    •    Monday, Feb. 26, at 4 p.m.: Deadline to request an absentee ballot in person at a local clerk's office.
    •    Tuesday, Feb. 27, from 7 a.m. to 8 p.m.: Election Day! Polls are open. Voters can also obtain absentee ballots at their local clerk's office until polls close, but only if they are registering to vote or updating their voter registration address.

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More information is available on the MI Secretary of State Website

Michigan: Governor Whitmer proposes $5,000 tax credit for caregivers

The Detroit Free Press reported today on a proposal by Governor Whitmer to provide tax relief to caregivers. 

According to the article, “Whitmer's Michigan caregiver tax credit proposal could provide up to $5,000 in tax relief” by Clara Hendrickson, 1/21/24, the plan would “provide up to $5,000 in tax relief for thousands of Michigan families, covering expenses such as counseling, transportation and nursing or respite services. Whitmer's office said the proposal will allow more seniors in Michigan to age where they live and help parents caring for children with long-term needs.”

According to a 2021 AARP study “…unpaid family caregivers spend an average of $7,242 annually. The advocacy group places the economic value of their contributions supporting the adults in their lives at an estimated $600 billion.”

The “Caring for MI Family Tax Credit" would cover expenses such as counseling, transportation and nursing or respite services to alleviate financial stress on families caring for seniors and parents caring for children with long-term needs.

What's old is new again: Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

This is a post from The DD News Blog for August 12, 2018. Not much has changed since then, with the exception of a worldwide pandemic that killed over a million people in the US and revealed serious inadequacies in the country's healthcare system. It also shined a light on the heroics of healthcare workers on the front lines of the pandemic, who, at first had the admiration and respect of the public. Later, they suffered abuse from the misdirected anger of a portion of the public stirred up by conspiracy theories about the virus and vaccines. The system of care for people with I/DD and their families also suffered with programs closing, some temporarily, but others permanently. Severe work shortages, especially among direct service professionals, hampered an already distressed system, seemingly on the verge of collapse. We seem to be back, but not quite, to where we were when the whole thing began. 

This is a good place to start, heading into a new year with the same old controversies that must be resolved if we are going to rebuild a fair system that includes recognition of the full range of people served and the diversity of needs.

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Sunday, August 12, 2018

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many I/DD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (I/DD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them.

To what extent is implementation of the Settings Rule improving the lives of people with I/DD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with I/DD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services.

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else.

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with I/DD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases.  [He currently serves as general counsel of the US Department of Health and Human Services and is on leave from the University of Michigan Law School] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.”

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings.

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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See also,

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

Ian Barker Is thirty-nine!

Happy Birthday, Ian!

When Ian was born, he was smaller than a five-pound bag of sugar, but better looking. He spent six weeks in the Stanford Hospital Neonatal Intensive Care Unit (the NICU), with a nasty alpha strep infection acquired in utero, an extremely rare event. Some poor intern or medical student was assigned the job of finding out exactly how rare this is - most cases of alpha strep infection in newborns are acquired during a vaginal birth, but he was born by C-section. The student, without the benefit of our modern search engines, came up with about 30 similar cases.

During his first few days of life, Ian endured something like toxic shock syndrome that develops very quickly into low blood pressure and multiple organ failure. We were given dire predictions of how poorly he would do. We brought our one-in-more-than-a-million infant with dire predictions home to meet his brother Danny who was eight years old. Danny had already manifested many of the dire predictions from his precarious birth that resulted in brain damage from seizures.

Oh well.

I don’t want to disappoint those looking for a feel-good story of beating the odds with a child who defiantly exceeded all expectations, but unfortunately that is not what happened. Ian has very severe cerebral palsy and intellectual disabilities. Fortunately, he learned to smile and laugh early. He is sweet and good-natured about all this and still good looking. He has honed his survival skills, endearing himself to the people around him to get the attention he needs. He loves the ladies (and men, but especially the ladies) who take care of him. We see him often. Since he does not talk, we have not figured out if he is laughing with us or at us, after all these years. 

Tackling gun violence in Detroit: preventing disabilities and making everyone safer

Gun violence is usually covered in terms of deaths and numbers of mass shootings. The survivors of gun violence often become part of the disability community -  when a victim is not killed by an AK-15, for instance, his or her survival, often with grave injuries, may lead eventually to lifelong disabilities and trauma-induced mental distress. The prevention of gun violence should be a concern of disability advocates. 

The Washington Post published an article last November, “Terror on Repeat: A rare look at the devastation caused by AR-15 shootings” by Silvia Foster-Frau, N. Kirkpatrick, and Arelis R. Hernandez, 11/16/23. The article is disturbing and nauseating in its description of what happens to bodies, classrooms, movie theaters, music festivals, and places of worship after a mass shooting event with this popular military style weapon. It is enough to make one re-consider the extent to which the 2nd amendment applies to the "right" to own weapons of mass destruction. If you are already convinced that there are limits to 2nd amendment rights, feel free to skip this article.

There is some good news and progress to report in Detroit where there has been a concerted and coordinated effort to reduce the number of homicides in the city:

“Detroit is close to recording its fewest homicides in nearly 60 years” by Andrea May Sahouri, 12/4/23.

According to the article, “As of Nov. 30, the city had recorded 228 homicides this year, an 18% drop compared to the 276 homicides during the same time last year. In 2018, Detroit recorded 261 homicides, the city's fewest since 1966, a year prior to the Detroit riot in 1967.” Also of note is that the population of Detroit has fallen from 1.58 million people in 1966 to an estimated 620,376 in 2022, but the downward trend in homicides is nevertheless good news for the citizens of Detroit.

A coordinated effort led by Wayne County Executive Warren Evans targeted seven key areas: “Reducing felony gun case backlogs in Wayne County Circuit and 36th District courts; increasing staffing for the Wayne County Prosecutor's and Sheriff's offices, as well as the Detroit Police Department; increasing coordination between the Wayne County prosecutor and DPD on shooting and homicide cases; increasing accountability for defendants released on tether to the Wayne County Sheriff's Office; increasing accountability from the Michigan Department of Corrections for those on probation and parole; and the implementation of the FAST unit, a joint fugitive apprehension unit of DPD and the Sheriff's Office, which apprehended nearly 1,000 individuals with outstanding felony warrants this year, prioritizing those wanted for gun crimes.”

The emphasis on reducing gun violence appears to be key to the success of this effort. Another key factor was in reducing the backlog of gun cases pending in the courts: “Felony gun cases pending trial in Wayne County Circuit Court have decreased from 4,000 in January 2022 to 1,330 in November 23, a 67% reduction, according to the coalition.”

When others have nothing but discouraging words for solving our gun violence epidemic, Kym Worthy, the Wayne County prosecutor is hopeful:  “This collaboration is unique in that issues are identified, solutions discussed, and these solutions are implemented. It is not just talk, talk, talk.”

NIH proposes to eliminate "reducing disability" from its Mission. The National Council on Severe Autism asks WHY?

In August of 2023, the NIH (National Institutes of Health) released a Request for Information (RFI): Inviting Comments and Suggestions on Updating the NIH Mission Statement. 

The proposal to remove the phrase "reducing disability" from the NIH mission came out of a 66-page report from the NIH Advisory Committee to the Director (ACD) Working Group on Diversity, Subgroup on Individuals with Disabilities which I have only glanced at, but hope to read more thoroughly. It appears there are many issues regarding the inclusion of people with disabilities in the medical workforce and reducing discrimination that are uncontroversial, but this is not one of them. Here is the reasoning behind the proposal:

“One immediate action for the NIH to support disability inclusion is to remove the language of ‘reducing disability’ from the NIH mission statement. The current mission statement could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed’.”

Here are the comments from NCSA to NIH. The period for accepting comments closed on November 24, 2023, but I'm sure that will not end the controversy.

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From the NCSA Blog:

The NIH Proposes Erasing "Reducing Disability" From Its Mission. NCSA Is Incredulous

October 24, 2023

To the shock of many, the National Institutes of Health (NIH) has proposed eliminating the goal of reducing disability from its mission. This came about based on a recommendation of a DEI Workgroup on disability concerned that this goal was “ableist.”

In response to the NIH request for public comment on the proposal, NCSA has submitted the following via email and in shortened form on the submission website. We encourage other organizations and individuals to submit comments as well. The deadline is November 24, 2023.

National Council on Severe Autism

PO Box 26853


San Jose, CA 95159

Office of the Director
National Institutes of Health
Via NIH submission website submission website

Re: Opposition to Proposal to Eliminate "Reducing Disability" from NIH Mission Statement, Notice Number: NOT-OD-23-163

To the Office of the Director:

We have read the National Institute of Health’s (NIH) proposal to erase the goal of “reducing disability” from its mission.

The ostensible purpose of this proposal is promotion of diversity, equity and inclusion (DEI) goals, specifically to “support disability inclusion” at the NIH. The internal report on which this idea is based, Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities Report, December 1, 2022, asserts that the current mission statement “could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed.’”

This argument rests on a clear logical fallacy: it conflates “disability” with “individuals who have disabilities.” Disability itself is not a neutral state of identity; by its very nature it means impairment, dysfunction, and incapacity. This fact is mutually exclusive from the other fact at hand: individuals with disabilities have value and should not be stigmatized. [emphasis added]

It should go without saying that the goal of reducing disability, i.e., impairment, on both a population and individual level is a moral and pragmatic imperative that does not carry any animus toward individual people whose functioning is limited by their disabilities. Our collective desire to eradicate polio hardly demeans those individuals who have fallen victim to polio-caused paralysis. Our aim to reduce fetal alcohol spectrum disorder, and all the disability it can entail, does not mean we believe those affected are morally flawed, or flawed in the sense of any abstract philosophies. Wanting to reduce these and countless other impairments that reduce functioning and human potential — multiple sclerosis, ALS, schizophrenia, the list is long — hardly equates to “ableism.”

When an obstetrician unwraps an umbilical cord choking a neonate, and therefore reducing the risk of lifelong impairment, is she engaging in ableism, or rather the most honorable sort of humanity? By any reasonable standard, disability should be prevented whenever possible. Laws mandating helmets and seat belts are not “ableist”; they protect the public from preventable injury and consequent disability and all the costs, burdens, pains and dependencies that result. When a pregnant woman takes folic acid supplements to reduce risk of spina bifida in her child, she is not “ableist,” she is obviously taking prudent preventive measures to reduce the risk of serious impairment in her child. Countless public health campaigns and NIH efforts shine a light on the risks of smoking, to reduce the prevalence of disabling conditions such as emphysema and COPD. Was it ableist for the FDA to have banned thalidomide?

The NIH-Wide Strategic Plan makes it clear that a paramount goal of NIH efforts is “to support innovative research ultimately aimed at protecting and improving human health.” The word health of course encompasses reduced risks and impacts of disability.

While disability is often difficult to “fix,” to borrow language of the report, the vast majority of people with disabilities would have preferred their disabilities be prevented, and if not prevented, then at least alleviated. Perhaps there are people who do not wish to have their disabilities reduced. For example, some deaf people may not wish to hear; some who are blind may not wish to see; some with paraplegia may not wish to walk. But this would be the 1%, not the 99%.

Some might argue that the mission statement’s remaining phrase “prevent or reduce illness” would encompass disabling conditions but of course that is not true. For example, autism is not an illness, it is a developmental disorder rooted in abnormal early brain development that causes significant functional disability in the vast majority of cases. Due to unknown causes, this serious mental disorder now affects about 3% of U.S. children, portending catastrophic long-term consequences for our polity.

While the need to reduce autism rates has never been more urgent, the new mission statement would not-so-subtly remove any mission to reduce autism, either on an individual or population level. Who would pay the price for this erasure of mission? Americans who count on the NIH to spearhead efforts to identify causes, and also treatments to reduce its disabling impacts, which can include failure to achieve basic communication or living skills, aggression, self-injury, elopement, ingestion of inedible objects, property destruction, and of course lifelong dependency.

With this proposal the NIH threatens to jump into a foreign moral universe detached from its core duties and in conflict with its congressional mandates and the urgent needs and desires of American citizens and taxpayers. We oppose it in the strongest terms possible.

Thank you for your consideration of our comments.

Very truly yours,

Jill Escher
/President

1. While the word ‘ableism’ does not have a concrete meaning in general parlance, the report defines “ableism” as “the belief that people with disabilities are flawed and less valuable than nondisabled people.”

2. Under the Americans with Disabilities Act, for example, a person with a disability is defined as a person who has a physical or mental impairment that substantially limits one or more major life activity.