Micki Edelsohn's book "Mom with a Megaphone" is now available on Amazon

"Mom with a Megaphone" by Micki Edelsohn is now available on Amazon! 

See the review by Jill Escher from the National Council on Severe Autism:

The Homes that Micki Built: "Mom with a Megaphone" by Micki Edelsohn

A 2022 Appeals Court decision in a Washtenaw County case restored a favorable ruling in an administrative hearing to a DD adult.

FYI: (This case was decided in February 2022.) The guardian of a DD adult requested an administrative hearing to determine whether an increase in the adult's budget from CMH was necessary to allow him to achieve his goals written in an Individual Plan of Service. Ultimately, an administrative law judge in an appeals hearing sided with the adult with DD and his guardian. WCCMH appealed the decision to the Circuit Court. It turns out the law says that the administrative law decision is final and WCCMH had no right to appeal the decision. Here is a summary and explanation of the case from the Website of Disability Rights Michigan.

Wiesner: Making sure that when Michigan Medicaid recipients win administrative appeals, the win is final.

Case Status: Resolved

Case Filed: March 2019

Main Concern

Under federal Medicaid law, Medicaid recipients have the right to challenge decisions made by the state Medicaid agency and its contractual agents, like local community mental health organizations (CMHs).
These challenges come in the form of administrative appeals. The concern in this case was that the recipient won his administrative appeal, but the CMH then appealed the favorable hearing decision to a judicial court. [emphasis added]

Summary 

Kevin Wiesner receives services from Washtenaw County CMH (WCCMH). In 2019, Mr. Wiesner’s guardian told WCCMH the budget given for his services was not enough to do what those services were supposed to according to Mr. Wiesner’s individual plan of service (IPOS). Mr. Wiesner’s guardian asked for more money, which WCCMH denied. Mr. Wiesner appealed that decision, and an administrative law judge (ALJ) found Mr. Wiesner was right: his budget was indeed insufficient. 

WCCMH then appealed that decision to the Washtenaw County Circuit Court, even though, WCCMH is a contractual agent of the Michigan Department of Health and Human Services (MDHHS), and ALJ decisions are the final decisions of MDHHS. The Circuit Court reversed the ALJ’s decision. Mr. Wiesner then appealed from the Circuit Court to the Michigan Court of Appeals, which held that Medicaid agencies like WCCMH do not have the right to appeal ALJ decisions. This reinstated the ALJ’s decision.

Outcome

The Michigan Court of Appeals held in a published decision that Medicaid agencies (MDHHS and its contractual agents) do not have the right to appeal ALJ decisions, because ALJ decisions are the final decision of MDHHS. This reinstated the ALJ’s decision in favor of Mr. Wiesner.

Details

March 2019
Mr. Wiesner requests an increased budget from Washtenaw County CMH (WCCMH), to achieve the goals in his individual plan of service (IPOS). WCCMH denied the request. Mr. Wiesner would later request an internal appeal.

July 2019
After the internal appeal, WCCMH upholds its own denial of Mr. Wiesner’s requested budget increase.

November 2019
Mr. Wiesner appeals WCCMH’s internal appeal decision to the administrative court.

January 2020
The Administrative Law Judge rules in favor of Mr. Wiesner, finding that his budget is not enough to achieve the goals in his IPOS.

May 2020
WCCMH appeals the ALJ’s decision in favor of Mr. Wiesner to the Circuit Court.

November 2020
Circuit Court denies Mr. Wiesner’s arguments that WCCMH has no right to appeal the ALJ’s decision and reverses the ALJ’s decision.

March 2021
The Michigan Court of Appeals grants Mr. Wiesner leave (gives him permission) to appeal the Circuit Court’s order.

April 2021
Mr. Wiesner appeals the Circuit Court’s decision to the Michigan Court of Appeals.

February 2022
The Michigan Court of Appeals reverses the Circuit Court and reinstates the ALJ’s decision, holding that WCCMH has no right to appeal the ALJ’s decision.

The federal Public Health Emergency for COVID-19 expires on May 11, 2023. Here's what happens next...

The following is from a CMS  fact sheet: "CMS Waivers, Flexibilities, and the Transition Forward from the COVID-19 Public Health Emergency", Feb 27, 2023. It covers changes to CMS requirements for Medicare, Medicaid, private health insurance, and other entities that are in effect during the COVID pandemic and will be lifted on May 11, 2023. [CMS is the federal Centers for Medicare and Medicaid Services, the federal agency that regulates Medicare and Medicaid.]

Some of the federal requirements will change, but that does not mean COVID is going away anytime soon. Pay attention to COVID conditions in your state. Currently nationwide, 652 people a day are dying from COVID-19. For Michigan, all but two counties are considered to be "Low Risk" for the virus. One good source of information is the COVID Dashboard at BridgeMichigan.com.

These excerpts refer to Medicare and Medicaid requirements and waivers that gave flexibility in administering federally-funded programs. See the Fact sheet for a more complete picture of all that will be affected by the expiration of the Public Health Emergency. (Most adults with developmental disabilities qualify for Medicaid based on their low income and disability. Many adults also qualify for Medicare when a parent retires or dies or when the disabled adult retires from employment.)

Excerpts from the FACT SHEET:

"The emergency declarations, legislative actions by Congress, and regulatory actions across government, including by the Centers for Medicare & Medicaid Services (CMS), allowed for changes to many aspects of health care delivery during the COVID-19 PHE. Health care providers received maximum flexibility to streamline delivery and allow access to care during the PHE [Public Health Emergency]. While some of these changes will be permanent or extended due to Congressional action, some waivers and flexibilities will expire, as they were intended to respond to the rapidly evolving pandemic, not to permanently replace standing rules."

"...For more information on what changes and does not change across the Department, visit https://www.hhs.gov/about/news/2023/02/09/fact-sheet-covid-19-public-health-emergency-transition-roadmap.html "

Medicare

"Vaccines: People with Medicare coverage will continue to have access to COVID-19 vaccinations without cost sharing after the end of the PHE.

"Testing: Additionally, people with traditional Medicare can continue to receive COVID-19 PCR and antigen tests with no cost sharing when the test is ordered by a physician [or other healthcare professional]..

"Treatments: There is no change in Medicare coverage of treatments for those exposed to COVID-19 once the PHE ends, and in cases where cost sharing and deductibles apply now, they will continue to apply. Generally, the end of the COVID-19 PHE does not change access to oral antivirals, such as Paxlovid and Lagevrio."

Medicaid and CHIP(Children's Health Insurance)

"Vaccines, Testing, and Treatment: As a result of the American Rescue Plan Act of 2021 (ARPA), states must provide Medicaid and CHIP coverage without cost sharing for COVID-19 vaccinations, testing, and treatments through the last day of the first calendar quarter that begins one year after the last day of the COVID-19 PHE. If the COVID-19 PHE ends as expected on May 11, 2023, this coverage requirement will end on September 30, 2024.

"After that date, many Medicaid and CHIP enrollees will continue to have coverage for COVID-19 vaccinations. After the ARPA coverage requirements expire, Medicaid and CHIP coverage of COVID-19 treatments and testing may vary by state.

"Additionally, 18 states and U.S. territories have opted to provide Medicaid coverage to uninsured individuals for COVID-19 vaccinations, testing, and treatment. Under federal law, Medicaid coverage of COVID-19 vaccinations, testing, and treatment for this group will end when the PHE ends."

Private Health Insurance [See the Fact Sheet for details]

Access to Telehealth Services

...“'Telehealth' includes services provided through telecommunications systems (for example, computers and phones) and allows health care providers to give care to patients remotely in place of an in-person office visit."

"The Consolidated Appropriations Act, 2023, extended many telehealth flexibilities through December 31, 2024, such as:
    •    People with Medicare can access telehealth services in any geographic area in the United States, rather than only those in rural areas.
    •    People with Medicare can stay in their homes for telehealth visits that Medicare pays for rather than traveling to a health care facility.
    •    Certain telehealth visits can be delivered audio-only (such as a telephone) if someone is unable to use both audio and video, such as a smartphone or computer."

Medicaid, CHIP, and Telehealth
 
"For Medicaid and CHIP, telehealth flexibilities are not tied to the end of the PHE and have been offered by many state Medicaid programs long before the pandemic. Coverage will ultimately vary by state. CMS encourages states to continue to cover Medicaid and CHIP services when they are delivered via telehealth."

COVID-19 Waivers and Administrative Flexibilities: How Health Care Providers and Suppliers are Affected [See the Fact Sheet] This includes Hospital at Home, Nurse Aide Training for Nursing Homes, Virtual Supervision, Scope of Practice, and Health and Safety Requirements, 

Medicaid Continuous Enrollment Condition

"The continuous enrollment condition for individuals enrolled in Medicaid is no longer linked to the end of the PHE. Under the Families First Coronavirus Response Act, states claiming a temporary 6.2 percentage point increase in the Federal Medical Assistance Percentage (FMAP) have been unable to terminate enrollment for most individuals enrolled in Medicaid as of March 18, 2020, as a condition of receiving the temporary FMAP increase." [FMAP means the Federal Medical Assistance Percentages (FMAPs) that are used in determining the amount of Federal matching funds for State expenditures for assistance payments.]

"As part of the Consolidated Appropriations Act, 2023, the continuous enrollment condition will end on March 31, 2023. The temporary FMAP increase will be gradually reduced and phased down beginning April 1, 2023 (and will end on December 31, 2023). For more information, visit Medicaid.gov/unwinding."

From the Kaiser Family Foundation (KFF)

"At the start of the pandemic, Congress enacted the Families First Coronavirus Response Act (FFCRA), which included a requirement that Medicaid programs keep people continuously enrolled through the end of the month in which the COVID-19 public health emergency (PHE) ends, in exchange for enhanced federal funding.Feb 22, 2023"

 

See also, "10 Things to Know About the Unwinding of the Medicaid Continuous Enrollment Provision" by Jennifer Tolbert and Meghana Ammula, Feb 22, 2023

The Homes that Micki Built: "Mom with a Megaphone" by Micki Edelsohn

"If Joan Rivers and Mother Theresa had a baby, you might end up with Micki Edelsohn." --J. Escher  

This is a book review of Micki Edelsohn's "Mom with a Megaphone" posted with permission from the National Council on Severe Autism. I couldn't have said it better myself.

[Now available on Amazon!]

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The I/DD Homes that Micki Built
February 6, 2023

Review: Mom With A Megaphone: My 50-Year Journey With My Son With An Intellectual Disability, by Micki Edelsohn, 2022 

By Jill Escher

If Joan Rivers and Mother Theresa had a baby, you might end up with Micki Edelsohn.

Edelsohn, a talkative dynamo of nearly 80 years of age, is a long-time leader in the field of housing for adults with intellectual and developmental disabilities (I/DD), particularly in Delaware where her all-volunteer Homes for Life Foundation has created 25 beautiful group homes and several condos, housing a total of 104 very lucky residents.

Now in her “twilight years,” as she puts it, this tireless do-gooder felt compelled to tell the story of her life’s work in order that the rest of us can pick up where she left off. Her book, Mom With A Megaphone, portrays a community housing pioneer consumed with worry about an increasingly bleak policy landscape. “We find ourselves in a perilous time for those who are most impaired and lack capacity,” she writes. “Where will they live and how will they spend their days?” She says the most vulnerable people in the disability community are being left out of disability policy decision-making.

I’ve been in this field long enough to see two kinds of disability advocates. In Camp One you find those who build, who create, who roll up their sleeves to constructively solve real-life problems and then pose with joy and a shovel at a groundbreaking. Here you will find Micki and other resourceful folk. 

But then there’s Camp Two — those who bloviate, inveigh, criticize, obstruct, spout ideological catch-phrases, and … do nothing to actually solve problems. The regrettable trend in disability advocacy over the past decade has been veritable warfare by a righteous, heavily funded Camp Two against a scrappy but exhausted Camp One, imperiling the future for adults who need supported housing.  

We see this drama play out across the arc of Edelsohn’s story.

We meet a young Micki who is so full of chutzpah that she launches over a fence to surreptitiously touch presidential candidate John Kennedy after he gives a speech. “If I’d done that today I would have been arrested, shot or tackled,” she reflects. Life was overwhelmingly normal. She goes to college, marries a nice Jewish doctor, has one son in 1968, and along the way develops an infatuation with American antiques.

Then in 1972, her second son Robert is born following a difficult breech delivery. Later, in the hospital nursery he stops breathing, and despite reassurances from staff, Micki instinctively knew something was wrong. In the following years Micki and her husband Lanny could see he was not developing normally, that he struggled to do things that came easily to his peers. As he entered school, “no one could really tell us what he needed.”

But with the passage of the Education of Handicapped Children Act (now IDEA), Robert’s was the first generation to benefit from special education from preschool to age 21, and he certainly makes progress, and learns to read. At age 13, he takes to the lectern for a modified Bar Mitzvah. But it was clear that he would always need supervision and support. They loved and accepted Robert “for who he was, not who we had hoped he would be.”

As Robert approaches adulthood, Micki begins to contemplate his adult living options, and ponders how she might go about creating a group home, having no experience but plenty of curiosity. That vague desire quickly turned into something much bigger. After schmoozing her way around Delaware, she met like-minded parents and generous donors, and before long her Homes for Life (HFL) Foundation was born.

By October 1990, four women moved into the first Homes for Life home. A partnership with Delaware’s MBNA bank proved essential to fundraising for the early homes, and the bank also provided employment for many HFL residents. This remarkable partnership, which presaged many of today's inclusive employment programs, included towel service at the corporate gym, helping manage MBNA’s mailing lists, and even silk-screening shirts.

Staffed only by volunteers, HFL was on a mission to create more and more and more homes, finding many individuals and foundations willing to contribute. Micki spent hours each day fundraising, working with the state DD agency and developers, and designing interiors to meet unique needs of the individuals. More homes were always needed, and after Micki created them — without government funding mind you — HFL deeded the homes to the Arc of Delaware, and debt-free! Micki worked so much magic she should have been crowned the fairy godmother of Delaware disability housing. Then the residents, who were handpicked by the state DD agency and not HFL, moved in and received staff support via Medicaid Home and Community Based Services (HCBS) waivers, a funding instrument for services provided in non-institutional settings.

Thanks to the HFL team’s fundraising and organizational prowess it was an astonishingly productive model. Despite some setbacks, such as opposition from neighbors who opposed group homes in their neighborhood, it went on to develop 25 homes, “representing 100 men and women with significant intellectual disabilities who now had a home for life,” Micki writes. “The satisfaction was hard to describe. The future looked promising.” HFL was celebrated, Micki received honors and awards for her innovative work.

In 2011 she was appointed to Obama’s President’s Committee for People with Intellectual Disability (PCPID), but inside the nation’s capitol she sensed a change. The mood was no longer one of constructive collaboration, but instead accusation, inflexibility, and dogma. Self-advocacy groups such as ASAN and SABE “wanted to define the meaning of community” in a narrow, one-size-fits-all way, a way that didn’t take into account the limitations, desires and needs of a wide swath of the I/DD population. Micki was appalled to see the Arc of the US even attacking its own affiliate for, gasp!, developing I/DD-friendly housing in Florida. Feel-good mantras like “dignity of risk” were tossed about to justify de-funding residential programs, sending a sinister message that disregarded the well-being of those with impaired judgment and cognition, and Micki recoiled. “When the consequences of risk taking are serious,” she writes, “there is no dignity.” Bingo.

The negativism that now predominated in the lavishly funded network of state DD Councils and other arms of the federally funded DD octopus like the Protection and Advocacy systems, and the Association of University Centers, was having harsh repercussions on the ground. Homes inhabited by adults with I/DD were prohibited from being in proximity to each other, because that was supposedly “too congregate.” Everything was suspect. Preposterously, advocates referred to HFL homes as “mini-institutions” as if a plush and spacious community home of four was akin to a seething Willowbrook housing 6,000. HFL homes went from being widely celebrated models that provided desperately needed “homes for life,” to suddenly “controversial.” One activist decried them as “non-inclusive" group homes (what did she want? to evict half the adults and replace them with Joe Schmoes instead? and how would that help?) The new Medicaid HCBS “Settings Rule” that disfavored disability-friendly options put projects serving those with the most severe disabilities in the crosshairs.

The real motivation behind the new inquisition, Micki contends, was not truly ideology but instead cost saving. Federal spending on HCBS for adults with I/DD was skyrocketing, and somehow it had to be contained. By limiting housing availability, a greater proportion of parents and families could do the heavy lifting instead. 

While Micki has no qualms about cost savings generally, she’s a realist. She is mostly worried about families and aging parents who cannot care for their loved ones. And she knows that in the end, a “setting” has little to do with the HCBS costs of care: “To put it bluntly, my son Robert will always need the same level of support whether he lives in a group home, intermediate care facility, intentional community, farmstead, condo with us in his natural family’s home, or in a tent in the backyard.” 

Micki rightly laments that Medicaid HCBS expenditures were supposed to be based on “person centered planning,” but lost in the heated debates over “settings” was any concern for the individual’s wants and needs. “The debate always seems to center on the location of the home, or the number of residents in the home or neighborhood,” she says, “not on the quality of care given.”

A grassroots effort that Micki helped form, called Families Speaking Up!, was one of the tiny Davids fighting a Goliath of taxpayer-funded DD agencies that opposed developments serving the most severely impaired, “making it an unfair fight.” Missiles were launched over every little thing. After Ford Foundation grant money supported a report by HFL about intentional communities serving adults with I/DD, a swarm of advocates complained to Ford, part of a “cancel” tactic to disempower Camp One. 

Things became truly “surreal,” she says. For example, on a Biden campaign Disability Platform call, a participant was condemned as “ableist” for simply using the word “severe.” The justice warriors squandered time and energy on breathtakingly trivial matters, all while HFL housing creation ground to a halt, denying dreams to disabled Delawareans.   The book closes with a return to son Robert, who now turns 50 and is now a happy man with many friends and activities. He leads a full life, but as his parents age his future is far from clear. The book also features a large amount of Appendix material, the first of which I admit is a 2016 essay by yours truly called “The Federal Government’s Quiet War Against Adults with Autism,” about dangers posed by the HCBS Settings Rule.

“Mom With A Megaphone” is ultimately a call for civility — and moreover, for appropriate services for all adults with I/DD. Micki sees immense diversity in the population, needing a huge array of options, and is sickened by “an unfortunate, senseless divide” that holds back progress millions of people so desperately need.

Jill Escher is president of the National Council on Severe Autism.

To receive a copy: Mom With A Megaphone is not currently available on Amazon or online. If you would like to receive a copy, please email NCSA at info@ncsautism.org and we will get back to you with ordering information. We will also post online ordering information when that is available.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

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P.S. My essay, "Danny at 40: Surviving the Inclusion Delusion" appears in the appendix of "Mom with a Megaphone".

Michigan nursing shortages addressed through new partnerships between State Universities and Community Colleges

Anyone who has been to an emergency room lately or had a hospital stay is probably aware of health care staffing shortages and its adverse effect on patient care. A shortage of nurses nationwide is a problem that states are dealing with in a variety of ways. [See “The State of the Nation’s Nursing Shortage” By Julia Haines, at USNews.com, 11/1/22] Michigan is doing its part to better train and incentivize nurses to stay at their jobs and to open up opportunities for training and employment in the communities where they live. It is a winning proposition for all concerned.

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An article from Bridge Michigan, “In Alpena, a bold effort to graduate more high-level Michigan nurses” by Isabel Lohman, 1/27/23, summarizes the problem and solution:

• Community colleges have sought for years to offer students a four-year nursing degree, a move fought by state universities
• Last summer, state leaders resolved the turf war by allowing schools to partner on four-year nursing degrees 
• Alpena Community College and Saginaw Valley State University announced the first of those partnerships, as the state strives to produce more nurses  
  

Under a budget deal arrived at last summer between the governor and the legislature, partnerships between community colleges and 4-year universities will allow nursing students at state community colleges to continue their studies on site for a four-year bachelor's degree, a credential that is preferred by many health systems. Community colleges can receive at least $2 million in grant funding to administer these programs.

“It’s a win for everyone, school leaders told Bridge Michigan. Two-and four-year colleges and universities are partnering instead of competing for nursing students, students will have more access to scholarship opportunities and local communities, particularly in rural areas, will be better able to keep nurses in the area to care for patients."

The program can also provide additional training toward and a BSN (Bachelor of Science in Nursing) for Registered nurses in Alpena that could include a hybrid setting with online classes.

Washtenaw County Community Mental Health Meetings

 Washtenaw County Community Mental Health (WCCMH) Information

From the Website: 

"What is Community Mental Health?

"Washtenaw County Community Mental Health is one of several community-based mental healthcare organizations in Michigan. We provide mental health services to adults with a severe and persistent mental illness and children with a severe emotional disturbance, and services to individuals with an intellectual and/or developmental disability, residing in Washtenaw County. We have locations in Ann Arbor and Ypsilanti. Please read our Programs and Services page to learn more about what we offer, and feel free to call us at 734-544-3050 to talk more about Getting Started."

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WCCMH Board Meetings are Bi-monthly from 9:30 a.m.-11:30 a.m.

The next meeting is scheduled for November 18th, 2022

WCCMH Board members are encouraged to participate in person to count towards a quorum. All others are welcome to attend this meeting virtually.

In Person:  Learning Resource Center-Michigan Room
4135 Washtenaw Ave, Ann Arbor, Michigan (near US 23 and Washtenaw Ave.)

Virtual via Zoom:    
Join from a PC, Mac, iPad, iPhone or Android device:
    Please click this URL to join. https://zoom.us/j/94922635037
 
Or One tap mobile:
     +19292056099,,94922635037# US (New York)
     +12678310333,,94922635037# US (Philadelphia)
 
Or join by phone:

Dial(for higher quality, dial a number based on your current location):

US: +1 929 205 6099  or +1 267 831 0333  or +1 312 626 6799  or +1 646 518 9805

Webinar ID: 949 2263 5037   

International numbers available: https://zoom.us/u/abORGuxsY

Click here for virtual meeting instructions

Meetings schedule

View the WCCMH 2022 Board and Board Committees meeting schedule revised 11-3-22 

Agendas are available prior to the meetings. Minutes are available following WCCMH Board approval.

View Most Recent Agendas and Minutes

WCCMH Board Members, revised 5-9-22

Study shows that Universal Masking in schools leads to fewer Covid cases

An article from the Washington Post,  "Universal masking leads to fewer covid cases in schools, study finds" by Donna St. George, 11/10/22, answers questions about the effectiveness of face masks in preventing the spread of Covid. 

Here are some excerpts from the article: 

"Public schools that kept universal masking requirements in place last year had significantly fewer coronavirus cases than their counterparts that lifted mandates as state policies changed, according to a study published in the New England Journal of Medicine that weighs in on the hotly debated pandemic safety measure.

"The study, which followed schools in the Boston region during the 2021-2022 academic year, found that the end of mask requirements was associated with an additional 45 coronavirus cases per 1,000 students and staff members — or nearly 12,000 cases during a 15-week period from March to June. "

The  conclusion of the study was that universal masking (requiring masks at school as opposed to leaving the decision up to individual students and their parents) is an important strategy in reducing the incidence of Covid, especially during periods of high transmission of the virus.

"The toll of the additional coronavirus cases was stark: They translated into at least 17,500 missed school days for students and 6,500 missed school days for staff members, at a time when schools were following an isolation period of at least five days for those infected, the study said."

One expert pointed out that the finding is important to the current crisis in child health, with many hospitals overwhelmed by children with respiratory infections including RSV, influenza and covid-19. 

“'Masking is one of the rare tools that can combat all of these,' she said."