Irene Tanzman is the mother of a son with severe autism from Massachusetts:
"In this video, I describe the experience of the
2024 VOR (Voice of Reason) legislative initiative. I go into detail
about what we did, how we were trained, and what legislation we
promoted. For anyone thinking about legislative advocacy for individuals
with severe/profound intellectual disabilities and/or severe/profound
autism, this is a must-see video. The VOR legislative initiative is
bootcamp for legislative advocates. There is no better training for
legislative advocacy than experiencing the VOR legislative initiative."
VOR's 2024 Legislative Initiative was held from May 7-9, 2024. I was not able to go this year, but I share Irene's enthusiasm for the experience of meeting directly with legislators and their aides in Washington, DC. and with other family advocates, most of whom have family members with severe to profound intellectual disabilities.
The most important message that VOR is advancing in its legislative initiative is that listening to families is of primary importance in crafting legislation and policy that serves and protects people with IDD.
You will hear Irene get into the nitty gritty of preparing to talk to legislators and how grueling and exhilarating the experience can be. Educating yourself and others is the first benefit of this advocacy, but it also instills confidence that your own experience with living with disabilities is a powerful message to legislators.
*****************
VOR materials shared with congressional staffers during the VOR 2024 Legislative Initiative.
At the end of February 2024, I was visiting my son’s group home, where I was given a letter addressed to Ian from the Michigan Department of Health and Human Services (MDHHS) and our local Washtenaw Department of DHS. It was the result of a dreaded Medicaid eligibility review by the State.
Ian is 39 years old and has profound and lifelong intellectual and developmental disabilities (IDD).
The letter, a “Health Care Coverage Determination Notice”, started out on a cheerful note giving hope of continued eligibility for at least some health care coverage:
As of 3/1/24, Ian is eligible for “…Ongoing (Plan First - PFFP) (Limited Coverage)”.
It turns out that this small sliver of help offered by the State was limited to family planning! This is indeed very bad news for someone who, for all his adult life, has had medical services covered by Medicare, Medicaid, and various state programs to help people with extraordinary and expensive needs. Never once has he asked for or needed family planning services. Beyond family planning, Ian was told that he could try to get insurance through Healthy Michigan, Michigan’s Medicaid expansion plan, or hope that he gets employment soon with great health insurance.
The form that this information was transmitted on was five pages long, much of it irrelevant and in code. I am usually good at translating agency-speak into English, but this was beyond my capabilities.
The group home supervisor had recently tried calling MDHHS about Ian’s benefits and was told that she needed to put Ian on the phone so that Ian could give permission for the employee to speak to the group home supervisor. The problem is that Ian does not talk and is unable to communicate in any specific way. We know when he is happy, sad, distressed, joyful or somewhere in between, but we have no idea if he knows what “giving permission” means. That is why my husband and I have been appointed as Ian’s plenary co-guardians through the Washtenaw County Probate Court.
Apparently, the unravelling of Ian’s health insurance was triggered by a failure to fill out paperwork in a timely manner and appeal a decision that was made some time ago that stopped payments to him for Supplemental Security Income (SSI). Ian’s brother Danny, who was also profoundly disabled, died in October of 2022. After that Ian’s social security benefits, based on his share of his father’s retirement benefits, increased to the point where he was no longer eligible for SSI. In Michigan, a person who qualifies for SSI is automatically eligible for Medicaid.
I was notified of Ian’s change in SSI benefits two weeks after Danny died, but I did not remember receiving the notice. There it was, however, in my “Ian Files”. I did not realize that this might affect Ian’s Medicaid, but I did notice that his SSI check was no longer appearing in his monthly bank statements. The notice stated that I would need to appeal to the state if it was planning to drop his Medicaid coverage. This was during the COVID-19 emergency when federal rules protected people on Medicaid from losing Medicaid benefits.
[If you are not confused yet, you should be.This is just one of those glitches that families experience all the time when dealing with agencies that provide services to their disabled family member. It is one reason you will find family members, especially parents, who develop their own type of Caregiver Savant Syndrome, who can rattle off lists of symptoms, medications, and specialists who treat whatever it is their kid has, or quote from law and court cases that pertain to their child’s rights, or list agencies they have complained to and who within those agencies are helpful and who are not.]
Re-determination of Medicaid eligibility is not just a Michigan problem, but a countrywide mess. This is from an article, "Worse Than People Can Imagine: Medicaid ‘Unwinding’ Breeds Chaos in States" from KFF Health News regarding eligibility reviews of Medicaid beneficiaries after the COVID-19 emergency protections were rescinded in Spring of 2023:
“Seven months into what was predicted to be the biggest upheaval in the 58-year history of the government health insurance program for people with low incomes and disabilities, states have reviewed the eligibility of more than 28 million people and terminated coverage for over 10 million of them. Millions more are expected to lose Medicaid in the coming months.”
To continue with the Ian saga:
I have been to enough conferences about disability rights, Medicaid, and the availability of services to have remembered that if someone receives an “adverse” decision to change or drop services, that decision can be appealed. The agencies involved have to continue providing benefits until a decision is made at an administrative appeals hearing, as long as the decision is appealed immediately.
I decided to appeal, but first, I needed to call wheelchair seating at the University of Michigan. They were on the brink of delivering a new custom-made wheelchair to Ian that had been in the works for over 7 months and I was not about to let a lapse in Medicaid benefits get in the way of the chair’s delivery. They said they could have the chair done by the next day.
Then I whipped together an appeal to the the Michigan DHHS with a plea to reconsider their decision to drop Ian’s Medicaid coverage, with the first point being that he would never be able to afford medical coverage or other services with his Social Security benefits as his only source of income. I threw in a description of Ian that would have made the severity of Ian’s disabilities obvious to anyone over the age of three who had ever met him in person. Furthermore, his status as a person with a disability that qualified him for benefits in the first place had not changed. I’m sorry if this sounds like bragging, but after 47 years in the disability world, I am really good at this and I do think it ultimately helped in resolving the issue.
I faxed the appeal to the our local DHHS office and we waited. I got another Health Care Coverage Determination Notice again telling me that Ian was being offered inadequate coverage even though I should have been informed about what I knew already - that he would continue with full coverage at least until a hearing could be held over my appeal.
Then I heard that sometimes it was faster to get Medicaid reinstated by just reapplying for the benefit. So on 4/5/24 my husband and I trudged off to the local DHHS office to see if we could pick up paper work to reapply for benefits.
As we entered the door to the DHS office, I noticed immediately that there was a security guard at the entrance. A good thing, I thought, considering how angry people get when they are being put through this form of light torture. I appreciated that the first gatekeeper was good at controlling the crowd. When it was finally my turn, I explained that we wanted to pick up some paperwork to fill out so that we could reapply for benefits for our son. Apparently, one does not just pick up paperwork without a reason and an appointment, so I explained that our boy is profoundly disabled and has been since birth. We just wanted the State to recognize this and continue with full coverage of his medical health insurance.
The gatekeeper asked if we could bring Ian in so that Ian could nod his head if he agreed to give us permission to talk to the gatekeeper. I said no, that is not a reliable way to get Ian’s permission, but I mentioned that I had also brought copies of our guardianship papers. With that, he said he would try to get us in to talk to a caseworker.
About 15 minutes later, we met with a very nice lady who admitted that this was an unusual situation. She had to go off to talk to her supervisor, who then needed to consult with a medical supervisor, to straighten things out. They decided that what they needed to do was to get Ian re-instated as a “Disabled Adult Child” through the Federal Social Security Administration (SSA). The good news was that the caseworker copied our guardianship papers and entered them into Ian’s file. If all goes right, Ian will not be asked again to give permission for us to talk to employees at MDHHS, something he is not able to do. This also meant that the MDHHS would send correspondence to both us as Ian’s guardians and to Ian at his group home.
In the meantime, our local DHHS office sent a notice of a pre-Appeals Hearing Conference for 3/11/24 to try to resolve the hearing issues. Unfortunately, it was a phone conference, and even though the group home had brought Ian to the local DHHS office, he stayed in the parking lot. Had anyone bothered to lay eyes on Ian before they decided to reduce his medical coverage, it would have been obvious that this was probably a mistake. The Appeals Hearing itself was scheduled for 4/25/24.
On 3/19/24, the Federal SSA sent a letter to me (as Ian’s Representative Payee) stating that because Michigan was no longer paying for Ian’s Medicare premiums, $174.70 would be deducted from his monthly SSA check.
On 4/5/24, MDHHS sent another “Health Care Coverage Determination Notice” stating that Ian is eligible for “03/01/2024-Ongoing (Full Coverage)”, but I was not sure what this meant exactly.
On 4/12/24, the Federal SSA sent me another letter, stating that the state of Michigan will indeed pay Ian's monthly Medicare premium, bringing his monthly SSA benefits back up to $1,277.00 per month.
Finally, after speaking to his local caseworker for DHHS, she explained that yes, the State is paying for full medical coverage for our dear boy. I was then convinced that the issue of health insurance coverage was resolved.
I then asked the State to “Dismiss the Request for Hearing…”, which involved filling out another form and an exchange of paperwork and a phone call with the State.
Conclusions:
If you have guardianship for a severely disabled family member, use it to make sure that you are in on important decisions regarding benefits and care. The movement to discredit people who are guardians and disparage guardianship as a violation of individual civil rights, doesn’t make sense for individuals who lack the ability to exercise their rights on their own behalf.
Don’t give up and assume that you are doomed to accept the loss of benefits because someone says so in a letter.
As far as the State is concerned, I think that anytime a state or local agency considers taking benefits away from a person with severe disabilities, bells and flashing lights should go off on the computers of state and local agency employees that says, “Reconsider before you do anything rash.” The first review by agencies should require that they contact someone who has laid eyes on the beneficiary and knows something about them. Think about all the wasted time and energy spent on Ian, only to come back around to where they started in the first place - assuring needed health care benefits to someone who should have been eligible all along.
Medicaid, Medicare, SSI, SSA, and the intricacies of their interface between the Federal and State agencies is complicated. I understand enough to pull Ian though this crisis, but there are large gaps in my knowledge. Sorry, but you will have to get in touch with another Caregiver Savant who is better equipped to help. Who knows? Sooner or later, that may be you.
And one more thing…as I was leaving Ian’s group home last week, I discovered that the State has sent a letter to another resident, stating that she was losing benefits because she was no longer disabled. That must have been a miraculous recovery, because she sure looked to me to be as disabled as she was before she received that letter.
We have had our own personal version of "unwinding chaos" since the end of February, 2024. Our son Ian, who has profound, lifelong, disabilities and lives in a group home in Ypsilanti, Michigan, was found ineligible for full Medicaid healthcare benefits that he had been receiving for almost 20 years. Before I go into what happened and how the problem has finally been resolved (knock-on-wood), here is an article from Kaiser Family Foundation (KFF Health News) with a broader picture of what is happening across the country:
[This story also ran on USA Today. It can be republished for free.]
The parents of a disabled man in Tennessee who had been on Medicaid for three decades fought with the state this summer to keep him enrolled as he lay dying from pneumonia in a hospital.
Seven months into what was predicted to be the biggest upheaval in the 58-year history of the government health insurance program for people with low incomes and disabilities, states have reviewed the eligibility of more than 28 million people and terminated coverage for over 10 million of them. Millions more are expected to lose Medicaid in the coming months.
The unprecedented enrollment drop comes after federal protections ended this spring [2023] that had prohibited states from removing people from Medicaid during the three pandemic years. Since March 2020, enrollment in Medicaid and the related Children’s Health Insurance Program had surged by more than 22 million to reach 94 million people. The process of reviewing all recipients’ eligibility has been anything but smooth for many Medicaid enrollees. Some are losing coverage without understanding why. Some are struggling to prove they’re still eligible. Recipients and patient advocates say Medicaid officials sent mandatory renewal forms to outdated addresses, miscalculated income levels, and offered clumsy translations of the documents. Attempting to process the cases of tens of millions of people at the same time also has exacerbated long-standing weaknesses in the bureaucratic system. Some suspect particular states have used the confusing system to discourage enrollment.
“It’s not just bad, but worse than people can imagine,” said Camille Richoux, health policy director for the nonprofit Arkansas Advocates for Children and Families. “This unwinding has not been about determining who is eligible by all possible means, but how we can kick people off by all possible means.”
To be sure, some of the Medicaid recipients who signed on to the program when the U.S. unemployment rate soared amid covid-19 lockdowns have since gotten health insurance through new jobs as unemployment dropped back to pre-pandemic lows.
And some of the disenrolled are signing up for Affordable Care Act marketplace plans. Centene CEO Sarah London, for example, told investors on Oct. 24 that the health care giant expected as many as 2.4 million of its 15 million Medicaid managed care members to lose coverage from the unwinding, but more than 1 million customers had joined its exchange plans since the same time last year.
Still, it’s anyone’s guess how many former Medicaid beneficiaries remain uninsured. States don’t track what happens to everyone after they’re disenrolled. And the final tallies likely won’t be known until 2025, after the unwinding finishes by next summer and federal officials survey Americans’ insurance status.
Without Medicaid, Patients Miss Appointments
Trish Chastain, 35, of Springfield, Missouri, said her Medicaid coverage is scheduled to expire at the end of the year. Though her children are still covered, she no longer qualifies because her income is too high at $22 an hour. Chastain’s employer, a rehab center, offers health insurance but her share of the premium would be $260 a month. “I can’t afford that with my monthly budget,” she said.
She said she did not know she might be eligible for a lower-cost plan on the Affordable Care Act marketplace. That still would mean new costs for her, though. Gaps in coverage can jeopardize people’s access to health services or their financial security if they get medical bills for care they cannot postpone.
“Any type of care that's put off — whether it's asthma, whether it's autism, whether it's something as simple as an earache — can just get worse if you wait,” said Pam Shaw, a pediatrician in Kansas City, Kansas, who chairs the American Academy of Pediatrics’ state government affairs committee.
Doctors and representatives of community health centers around the country said they have seen an uptick in cancellations and no-shows among patients without coverage — including children. Nationwide, states have already disenrolled at least 1.8 million children in the 20 states that provide the data by age. Children typically qualify more easily than adults, so child advocates believe many kids are being wrongly terminated based on their parents’ being deemed no longer eligible.
Meanwhile, enrollment in CHIP, which has higher income eligibility levels than Medicaid, has shown only a tiny increase.
Kids accounted for varying shares of those disenrolled in each state, ranging from 68% in Texas to 16% in Massachusetts, according to KFF. In September, President Joe Biden’s administration said most states were conducting eligibility checks incorrectly and inappropriately disenrolling eligible children or household members. It ordered states to reinstate coverage for some 500,000 people.
Varying Timetables, Varying Rates of Disenrollment
Idaho, one of a few states that completed the unwind in six months, said it disenrolled 121,000 people of the 153,000 recipients it reviewed as of September because it suspected they were no longer eligible with the end of the public health emergency. Of those kicked off, about 13,600 signed up for private coverage on the state’s ACA marketplace, said Pat Kelly, executive director of Your Health Idaho, the state’s exchange. What happened to the rest, state officials say they don’t know.
California, by contrast, started terminating recipients only this summer and is automatically transferring coverage from Medicaid to marketplace plans for those eligible.
The Medicaid disenrollment rates of people reviewed so far vary dramatically by state, largely along a blue-red political divide, from a low of 10% in Illinois to a high of 65% in Texas.
“I feel like Illinois is doing everything in their power to ensure that as few people lose coverage as possible,” said Paula Campbell of the Illinois Primary Health Care Association, which represents dozens of community health centers.
Nationwide, about 71% of Medicaid enrollees terminated during the unwinding have been cut because of procedural issues, such as not responding to requests for information to verify their eligibility.
It’s unclear how many are actually still eligible. State and local Medicaid officials say they have tried contacting enrollees in multiple ways — including through letters, phone calls, emails, and texts — to check their eligibility. Yet some Medicaid recipients lack consistent addresses or internet service, do not speak English, or are juggling more pressing needs.
“The unwinding effort continues to be very challenging and a significant lift for all states,” said Kate McEvoy, executive director of the National Association of Medicaid Directors.
‘People Are Not Getting Through
In many states, that has meant enrollees have faced long waits to get help with renewals. The worst phone waits were in Missouri, according to a KFF Health News review of letters the Centers for Medicare & Medicaid Services sent to states in August. In the letter to Missouri’s Medicaid program, CMS said it was concerned that the average wait time of 48 minutes and the 44% rate of Missourians abandoning those calls in May was “impeding equitable access” to assistance and patients’ ability to maintain coverage.
Some people are waiting on hold more than three hours, said Sunni Johnson, an enrollment worker at Affinia Healthcare, which runs community health centers in the St. Louis area. That’s a significant hurdle for a population in which many have limited cellphone minutes.
In Florida, which has removed over 730,000 people from the program since April, enrollees earlier this year were waiting almost 2½ hours on a Spanish-language call center, according to a report from UnidosUS, a civil rights advocacy group. The Spanish versions of the Medicaid application, renewal website, and other communications are also confusing, said Jared Nordlund, the Florida director for UnidosUS.
“They can barely get the Spanish translations right,” he said.
Miguel Nevarez, press secretary for Florida’s Department of Children and Families, which is managing the state’s Medicaid redetermination process, criticized complaints about poor translations and long waits for the Spanish-language call center as a “false narrative.” He said, “The data clearly shows Florida has executed a fair and effective plan for redeterminations.”
In California, similarly jammed phone lines, crowded and understaffed county offices, and trouble downloading renewal applications electronically are all “compounding people’s difficulty to renew” their Medicaid, said Skyler Rosellini, a senior attorney in the Los Angeles office of the National Health Law Program. “We do know, based on the cases we’re getting, that people are not getting through.”
Jasmine McClain, a 31-year-old medical assistant, said she tried everything before Montana ended Medicaid coverage for her kids, ages 3 and 5, in early October. She tried submitting paperwork online and over fax to prove they still qualified. She spent hours on hold with the state hotline. After her kids’ coverage ended, she went to a state public assistance office in Missoula but couldn’t get an appointment. One day in mid-October, roughly 30 people lined up outside the office starting as early as 6:40 a.m., before its doors opened.
After three weeks of her pleading for help while her kids were uninsured, the state restored her kids’ coverage. She said a supervisor told her the family’s paperwork submitted online wasn’t processed initially.
“The phone call system was a mess. Callbacks were a week out to even talk to somebody,” McClain said. “It just was just a lot of hurdles that I had to get through.” Spokespeople for the Montana, Florida, and Missouri Medicaid programs all said their states had reduced call wait times.
Some Medicaid recipients are seeking help through the courts. In a 2020 class-action lawsuit against Tennessee that seeks to pause the Medicaid eligibility review, parents of recipients describe spending hours on the phone or online with the state Medicaid program, trying to ensure their children’s insurance coverage is not lost.
One of those parents, Donna Guyton, said in a court filing that Tennessee’s Medicaid program, called TennCare, sent a June letter revoking the coverage of her 37-year-old son, Patrick, who had been eligible for Medicaid because of disabilities since he was 6. As Guyton made calls and filed appeals to protect her son’s insurance, he was hospitalized with pneumonia, then spent weeks there before dying in late July.
“While Patrick was fighting for his life, TennCare was threatening to take away his health insurance coverage and the services he relied on,” she said in a court filing. “Though we should have been able to focus on Patrick’s care, our family was required to navigate a system that kept denying his eligibility and putting his health coverage at risk.”
TennCare said in a court filing Patrick Guyton’s Medicaid coverage was never actually revoked — the termination letter was sent to his family because of an “error.
Phil Galewitz in Washington, D.C., wrote this article. Daniel Chang in Hollywood, Florida; Katheryn Houghton in Missoula, Montana; Brett Kelman in Nashville, Tennessee; Samantha Liss and Bram Sable-Smith in St. Louis; and Bernard J. Wolfson in Los Angeles contributed to this report.
According to an article from the Detroit Free Press, "Washtenaw, Wayne county officials recommend vaccination amid potential measles exposures" by Jenna Prestininzi, 3/3/2024, measles has made its way to Washtenaw and Wayne County, Michigan:
"Those most at risk include those who are unvaccinated, those who don't know their immunization status, pregnant women and those who have a weakened immune system because of illness and diseases like HIV, malnutrition and/or medications."
"Common measles symptoms include: • High fever (may spike to more than 104℉). • Cough. • Runny nose. • Red, watery eyes (conjunctivitis). • Tiny white spots on the inner cheeks, gums and roof of mouth two to three days after symptoms begin. • A rash that is red, raised, blotchy; often starts on face, spreads to the trunk, arms and legs three to five days after symptoms begin.
Anyone potentially exposed should get vaccinated against measles within 72 hours if not already immune, officials said. The MMR vaccine protects against measles, rumps [sic] and rubella, with two doses considered to provide immunity."
[I left the above typo in because news outlets that rely on spellcheck rather than actual human beings to check for errors deserve the embarrassment. Imagine if that had appeared in a headline - "The MMR vaccine protects against rumps". Maybe that would increase the vaccination rate?]
"Widespread measles vaccination greatly reduces the virus' spread, with one dose about 93% effective and two doses about 97% effective, according to the CDC. In Michigan, vaccine coverage for the measles, mumps, rubella vaccine for children 4 to 6 years old has fallen from 89.4% in 2017 to 84% in 2022. Among children ages 19-35 months old, vaccine coverage has dropped from 84.7% in April 2020 to 83.6% in December 2023, state health officials said."
"...Children younger than 5 years of age and adults older than 20 years of
age are more likely to suffer from complications. Common complications
are ear infections and diarrhea. Serious complications include pneumonia
and encephalitis."
Common complications: • Ear infections occur in about one out of every 10 children with measles. • Diarrhea is reported in less than one out of 10 people with measles.
Severe complications in children and adults
Some
people may suffer from severe complications, such as pneumonia
(infection of the lungs) and encephalitis (swelling of the brain). They
may need to be hospitalized and could die.
Hospitalization. About 1 in 5 unvaccinated people in the U.S. who get measles is hospitalized.
Pneumonia.
As many as 1 out of every 20 children with measles gets pneumonia, the
most common cause of death from measles in young children.
Encephalitis.
About 1 child out of every 1,000 who get measles will develop
encephalitis (swelling of the brain) that can lead to convulsions and
can leave the child deaf or with intellectual disability.
Death.
Nearly 1 to 3 of every 1,000 children who become infected with measles
will die from respiratory and neurologic complications.
Complications
during pregnancy. Measles may cause pregnant women who have not had the
MMR vaccine to give birth prematurely, or have a low-birth-weight baby.
Long-term complications
Subacute
sclerosing panencephalitis (SSPE) is a very rare, but fatal disease of
the central nervous system that results from a measles virus infection
acquired earlier in life...
The Measles, Mumps,
Rubella (MMR) vaccine is very safe, and it is effective at preventing
measles, mumps, and rubella. Vaccines, like any medicine, can have side
effects. Most people who get MMR vaccine do not have any serious
problems with it. Getting MMR vaccine is much safer than getting
measles, mumps, or rubella.
Common Side Effects of MMR Vaccine • Sore arm from the shot • Fever • Mild rash
• Temporary pain and stiffness in the joints, mostly in teenage or
adult women who did not already have immunity to the rubella component
of the vaccine
MMR vaccine has been linked with a very small risk of
febrile seizures (seizures or jerking caused by fever). Febrile seizures
following MMR vaccination are rare and are not associated with any
long-term effects. Because the risk of febrile seizures increases as
infants get older, it is recommended that they get vaccinated as soon as
recommended.
Some people may experience swelling in the cheeks or
neck. MMR vaccine rarely causes a temporary low platelet count, which
can cause a bleeding disorder that usually goes away without treatment
and is not life threatening.
Extremely rarely, a person may have a
serious allergic reaction to MMR vaccine. Anyone who has ever had a
life-threatening allergic reaction to the antibiotic neomycin, or any
other component of MMR vaccine, should not get the vaccine.
On the same CDC page, see Related Scientific Articles ******************
Deciding to vaccinate or not, seems to me, to be similar to deciding whether to use an antibiotic to treat a bacterial infection. A few people have serious and even life-threatening reactions to certain antibiotics. Weighing the alternative of living with a raging infection against the likelihood of a serious side-effect, most people come down on the side of taking the risk with an antibiotic. Included in weighing that risk is past experience with the medication and allergic reactions that have already been experienced.
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.
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.
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.
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.
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.
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.
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:
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.”
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.
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.
The Department of Health and Human Services has issued a proposed rule "Discrimination on the Basis of Disability in Health and Human Service Programs or Activities", intended to update, clarify, and strengthen the implementing regulation for Section 504 of the Rehabilitation Act of 1973.
VOR contends that the policies of HHS, notably the actions taken over the years by the Administration for Community Living and several of the organizations they subsidize (including State P&As [a.k.a. Disability Rights] and DD Councils, University Centers for Excellence, and the National Disability Rights Network) have regularly committed acts of discrimination against those with the most severe and profound intellectual and developmental disabilities and their families.
Below is the text of the letter to HHS:
To: U.S. Department of Health and Human Services, Office for Civil Rights Proposed new implementing regulations on Section 504 of the Rehabilitation Act of 1973: Non-discrimination on the basis of disability in Health and Human Services programs or activities. VOR – A Voice of Reason advocates for a full continuum of care and a full array of residential services and employment opportunities for all people with intellectual and developmental disabilities and/or autism. We would like to remind HHS of the broad diversity that characterizes the individuals who make up this population, from those who need some assistance to function in society to those who cannot survive without 24 hour around-the-clock assistance. For the past 25 years, HHS has pursued “inclusion for all” policies that VOR believes have left behind the most disadvantaged members of this community. Before you take another step to dismantle more of these programs, we would urge you to review the purposes of the ADA, the Olmstead decision and the real-world effects on the most vulnerable population that we believe has been demonstrably hurt and even died as a result of these policies. [Some disability organizations call for sweeping changes to close all residential programs and services that provide care in congregate settings serving more that 3 or 4 people with disabilities.] We urge you not to just count the number of large facilities closed and people moved into the community, but to assess whether their needs are being met, whether there are sufficient well-trained staff and the overall the quality of their lives, including the frequency of abuse and neglect and the mortality rates relative to their former homes. The ADA recognized the harm that our society had done by institutionalizing people who were “different” and called for giving them opportunities to participate in mainstream activities. Olmstead properly implemented that policy by permitting two individuals who wished to leave an institution and move into a less restrictive environment to do so, recognizing that institutional care was, by definition, segregated care. At the same time, Justice Ginsburg recognized that the I/DD population varied widely and that, for some people, an institution was the least restrictive environment. Since enactment of the ADA, government policy has helped thousands of people who were capable of living and prospering in the broader community to leave institutions and lead a more productive and filling life. The DD System overseen by HHS has played a major role s in helping people who seek care in less restrictive environments to transition into Home- and Community-Based Services (HCBS) settings or receive more at-home or own-home supplemental services. We applaud the success of these programs. At the same time, we have been concerned that this movement has ignored the reality that Justice Ginsburg recognized that some people can benefit most from institutional care and that ideological blinders have eroded another key component of the DD System – intermediate care facilities for people with intellectual disabilities (ICF or ICF/IID). Part of the premise for pursuing the closure of ICFs has been the usually unspoken view that parents who choose ICF care for their loved ones are not acting in their best interest. Nothing could be farther from the truth. Being the parent or sibling of a child with severe or profound intellectual disability or autism presents a lifetime of tremendous challenges. Aside from the daily challenges posed by the child her/himself, one of the most difficult challenges is navigating the DD System. Parents and guardians try to make informed choices from a limited set of imperfect options. Most families’ first choice is to have their child live at home. As the child ages and new challenges emerge, the parents have to re-assess those options, often choosing a small privately operated group home. If and when the group home system fails to meet their child’s needs, they usually seek a higher level of care in a larger congregate setting. Unfortunately, our system usually makes this difficult decision even more difficult to realize. Federal and state policies favoring HCBS care over the years have reduced the number of available beds in ICFs and created a two-tiered system, favoring HCBS funding and decreasing funding for the ICF system. While many proponents of HCBS’ inclusionary policies see this as progress, the families that rely on ICF services feel they have been victims of discrimination by their own community and by the very systems that have been put in place to serve them. ICFs are not for everyone. Most people do benefit from some form of HCBS service. But not everyone. Larger congregate care facilities offer an economy of scale, allowing them to have 24/7 nursing, doctors on campus Monday – Friday and on call nights and weekends, dental clinics, psychiatric services and behavioral specialists, physical therapy, music therapy, swimming, and other services and amenities, most of which cannot be offered in a small group home. ICFs are more highly regulated by CMS and certification is far tougher than it is for HCBS services. Also, ICFs are required to offer active treatment, which may or may not be offered in group homes, but is not required. For people whose existential needs exceed their desire for acceptance by the non-disabled community, ICFs are essential. Section 504 prohibits discriminatory acts in health care and human services, including denying qualified individuals the opportunity to participate in or benefit from federally funded programs and services. ICFs are federally approved, federally funded residential facilities. Many states have closed admission to these facilities, or ceased to create new opportunities to receive care in these facilities in favor of moving individuals to HCBS services. We contend that Section 504 must protect the right to care in ICF settings as well as in HCBS settings. This discrimination has become accepted by all but those who need this level of care. The governors of several states have closed ICFs based on the biases of those who portray the ID/A population as a monolithic group that always benefits from community living. Presidential administrations have endorsed this ideology. The Department of Justice, too, has brought lawsuits, closing facilities for not meeting these arbitrary standards. The bias in favor of HCBS care was memorialized on April 18, 2012, when the Administration on Developmental Disabilities and other agencies were combined into the Administration for Community Living (ACL). Over the past decade, ACL has pursued an ideology of “everyone does better in the community” that ignores the fact that many of those with severe and profound I/DD and autism cannot. As a result of this directive, ACL has funneled millions of dollars into state DD Councils and state Protection and Advocacy agencies (P&A). These agencies have targeted ICFs, launching far more on-site investigations in these facilities than in group home environments, and using federal funds to initiate class action suits aimed at closing ICFs (Illinois, Ligas v. Maram, and Ohio, Ball v. Kasich to name just two. In both of these cases, the court found for the families defending ICF care, but at a huge personal cost to the families involved). In addition to funding the National Association of Councils on Developmental Disabilities (NACDD) and the National Disability Rights Network (NDRN), the ACL provides funding for the Association of University Centers on Disabilities (AUCD). The AUCD conducts studies on matters affecting people with I/DD and autism, but usually limits the topics of their studies to those which will point to successful outcomes of programs initiated by the ACL. They have not conducted studies on mortality rates of people who have been forced out of their ICF homes of thirty or forty years when state governors have acted, either independently or at the direction of the state P&A or DOJ lawsuits, to close these facilities. They have not attempted to document the outcomes of people who have been forced out of sheltered workshops and 14(c) employment opportunities and wind up in day programs with no work, no pay, and no options, and forced into an even more segregated community with a cohort of more severely disabled individuals. Discrimination against the neediest people with ID/A also applies to employment opportunities. Employment facilities licensed under provisions of Section 14(c) of the Fair Labor Standards Act, aka sheltered workshops, have been under attack by many of the same groups that advocate for the closure of ICFs. Without these programs, most of those who participate in them would be left without daytime activities as the reality is that they cannot perform to a level that warrants paying them the minimum wage. Ideological dogma cannot change reality. Despite the fact that these are voluntary programs, and the fact that they are enthusiastically approved by a vast majority of those who participate in them (97%), non-participants with high acuity, non-intellectual disabilities, federal and state agencies, and federal and state legislators have been calling for these programs to be phased out and eliminated. Furthermore, we would contend that the states that have ended their 14(c) programs have already committed discriminatory acts against people with intellectual disabilities and autism, by denying qualified individuals the opportunity to participate in or benefit from federally funded programs, services, or other benefits. If we are indeed to rectify this discrimination, should we not insist that those states re-open access to 14(c) programs? The normalization of these discriminatory policies by HHS also gives license to the Congress to enact legislation that further discriminates against the neediest component of the ID/A population. The continuing enactment of legislation that either increases funding for HCBS services only or establishes a favorable funding formula for those services instead of ICF services is yet another way that HHS is complicit in undermining services for those who need them the most. Advocating and supporting these discriminatory policies gut a federal program that remains on the books and provides valuable and often essential service. At the same time, it has not met its practical goals – to provide more money and better services for people who reside in HCBS facilities. It is past time for HHS to return to the basics of the ADA and Olmstead – to insure that individuals with ID can choose where they wish to live and to advocate for what is best for the individuals, as determined by them and their families and guardians, not by lawyers and professional advocates. The Supreme Court’s 1999 decision in Olmstead is often cited as a mandate for inclusion by self-advocates, well-endowed advocacy organizations, and government agencies. As indicated above, that is not what the decision says. Olmstead protects choice in its three-prong test and specifically acknowledges the need for “institutional” care, i.e. intermediate care facilities, in some circumstances. Justice Ruth Bader Ginsberg cited an amicus from VOR in her decision, stating, “Each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing that, on a case-by-case basis, that setting may be in an institution.” [1] The Court was very clear that Olmstead was not to be viewed as a one-dimensional “inclusion mandate”, recognizing the need for States to maintain a range of facilities for the diverse needs of persons with developmental disabilities: "Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." [2] “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community - based treatment be imposed on patients who do not desire it." [3] "[U]nder Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities [1] when the State's treatment professionals determine that such placement is appropriate, [2] the affected persons do not oppose such treatment, and [3] the placement can be reasonably accommodated , taking into account the resources available to the State and the needs of others with mental disabilities." [4] "As already observed [by the majority], the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. . . Some individuals . . . may need institutional care from time to time 'to stabilize acute psychiatric symptoms’. . . For other individuals, no placement outside the institution may ever be appropriate...for these persons, institutional settings are needed and must remain available." [5] To be clear, we understand that we are asking the very agencies that created these policies and discriminated against those with the most severe and profound levels of I/DD and autism to cease these discriminatory practices. But, before you move further down this path, we ask you to look at our families and our loved ones through our eyes for a few moments: Having a child with a severe or profound intellectual disability or autism involves a lifetime of extremely difficult choices. Our families ask for your help and support in making the best choices, from a full range of high-quality options, not from a rigid ideology that does not comport with reality. We ask for this support from those in government who oversee the DD system and provide those services, and from the community of people with I/DD and autism and their families, who should be the first to empathize with our challenges and provide emotional support. It’s time we end the discrimination against those with the most severe intellectual and developmental disabilities and autism. These ideals should be at the heart of any re-assessment of Section 504. --------------------------------- [1] Olmstead v. L.C., 527 U.S. 581, at 605 [2] ibid, at 597 [3] ibid, at 601-602 [4] ibid, at 607 [5] ibid, at 604-605
