Illinois: A mother’s plea for better oversight of group homes for people with disabilities

This is an investigative report from KSDK in St. Louis into oversight of Illinois CILAs (Community Integrated Living Arrangements), group homes for people with intellectual and developmental disabilities (I/DD): 'People look the other way': Mother begs for better oversight of group homes for people with disabilities, by Paula Vasan, 10/6/2022.

“PINCKNEYVILLE, Ill. — A mother’s love is limitless. It means fighting for your child.'We had 30 to 40 ER visits in less than three years,' said Peggy Strong. 'My daughter almost died.'  She said it was because of a problem her daughter Marjorie couldn’t tell her about. 'She also is non-verbal. She is incapable of fending for herself,' said Strong.”…

Read the article, but also view these two interviews on Youtube to get the full story:

Extended interview: Peggy Strong

Peggy Strong's daughter, Marjorie, lived in a taxpayer-funded group home in Pinckneyville, Illinois. Strong said case managers told her it was the best option for her daughter. Red flags seemed to prove otherwise.

Extended interview: Rita Winkeler

Disability rights advocate Rita Winkeler is a critic of taxpayer-funded group homes, licensed by Illinois and run by private organizations. The homes are for people with intellectual and developmental disabilities, designed to better integrate them into society.

"When He Outgrew Cute..." by Jess Ronne

Here is a moving poem by Jess Ronne from the VOR (Voice Of Reason) FaceBook page:

When He Outgrew Cute.

When he outgrew cute
The looks changed from compassion to concerned
Towards him
And towards those who supported him.
And sometimes disgust
Overshadowed concern
As he stubbornly clung to his ways.

When he outgrew cute
The calls increased
Calls desperate for help
Desperate for summer options for a fifteen-year-old in briefs
Desperate for respite
Desperate for adaptive equipment
Desperate for anything that would assist a non-verbal child
Or anyone
And the voices were silent
Or they whispered –
Sorry.
Sorry.
Sorry.

When he outgrew cute
His movements were no longer celebrated
But instead feared
Violent head banging
Aggressive pulling
Dangerous optimism
With the strength of a man
And not that of a child.

When he outgrew cute
The damage began
Damage to walls
Damage to others
And damage to himself
And this damage
Wreaked havoc on more than just objects
It wreaked havoc on psyches as well.

When he outgrew cute
The walls caved in
And the house became a tomb
And the isolation suffocated those within
As they desperately yearned to belong
To something
Somewhere.

When he outgrew cute
Milestones were no longer encouraged
And his future grew dim
And symptoms of PTSD set in
For those who loved him
And had been rattled by his screams for years.

When he outgrew cute
Mood altering drugs were doled out like candy
One option after another
For him
And also –
Suggested for his caregivers.
Drugs to dull the pain
Drugs to pacify
Drugs to silence the demons.

When he outgrew cute
She outgrew herself
As every ounce of strength was poured into him
And she got lost in the daily grind
Lost in the sleepless nights
And invisible behind the never-ending tasks.

When he outgrew cute
She outgrew silence
And she raised her voice
To join the cacophony for change
And her battle cry rose –
A better tomorrow!
For him
And for those who loved him.
Because when he outgrew cute
He outgrew society
And that’s simply not an option.
For anyone.
Anymore.

When he outgrew cute
She found the strength to move forward
To move toward advocacy
And move toward hope.
She found the strength
To keep going
And keep growing
And she found the strength
To just keep livin

Written by Jess Ronne

Michigan: The tuition-free community college program, Michigan Reconnect, has been expanded to students 21 and older

With a shortage of workers in many professions affecting people with disabilities, especially fields related to health care and education, the Michigan Community College system could help fill in the gaps. For at least this year, the Michigan budget will allow an additional 350,000 Michiganders to take advantage of tuition-free college.

*****************
According to an article in the Detroit Free Press, “Michigan budget expands tuition-free community college program for more residents” by Arpan Lobo, 7/24/23, “…the 2023-24 fiscal year budget expands the Michigan Reconnect program to residents 21 and older. “

“…Lawmakers have earmarked an additional $70 million in the proposed budget heading to Gov. Gretchen Whitmer’s desk for the Reconnect program, but the funds are a one-time allocation. The program, launched in 2021, has provided scholarships for qualifying Michigan residents 25 and older without postsecondary degrees or certifications to attend an in-district community college or tribal college tuition-free, or cover the in-district rate for students attending a school outside of their resident district. The state also offers a Short-Term Training Program to cover up to $1,500 in tuition costs for skills training programs with similar eligibility guidelines.”

This is part of the Whitmer administration’s “Sixty by 30” goal of having  60% of Michigan residents obtain a college degree or skills certification by 2030. According to Lt. Gov. Garlin Gilchrist, about 50.5% of residents have either education level currently.

The Michigan Reconnect scholarship program is currently open to students 25 and older. “The spending plan was bolstered by a $9.2 billion surplus in the state’s coffers thanks to increased federal funding in the wake of the coronavirus pandemic, as well as boosted infrastructure spending by the feds” and will be used to include students 21 and older.

Community colleges allow people who may not be interested in or able to afford obtaining degrees available in 4-year colleges, but need 2-year associate degrees or a certification program to improve their employment opportunities. The legislature is currently looking at ways to permanently fund this program. 

Offerings at our local community college, Washtenaw Community College (WCC), include programs in nursing, physical therapy, and early childhood education. I'm sure there are many more that can be explored on the website.

See the Michigan Reconnect Program website to apply 

From the website:

If you’re 25 or older [21 or older for this fiscal year], and you’ve been thinking about going back to school to pursue your associate degree or a skills certificate, now might be the time. This page has tools to help you apply for Michigan Reconnect, find your in-district community college, and more.
To be eligible, you must:

    •    Be at least 25 years old when you apply [21 or older this year]
    •    Have lived in Michigan for a year or more
    •    Have a high school diploma or equivalent
    •    Have not yet completed a college degree (associate or bachelor's)

If you do not have a high school diploma or equivalent, visit Michigan.gov/LearnMoreEarnMore to get started. 

Michigan Reconnect provides free in-district tuition, mandatory fees, and contact hours for accepted and eligible applicants to pursue a Pell-eligible associate degree or skill certificate at any of Michigan's public community colleges. 

Have questions before you apply? Visit our Frequently Asked Questions to learn more about the program and what it offers.

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This is an article from the Detroit Free Press on more opportunities for free tuition from the Michigan university system: “How to access free tuition at Michigan colleges” by Jenna Prestininzi, 3/15/23.

Michigan: New Housing Community for adults with I/DD in Washtenaw County

Meeting tonight, 7/10/23: "Did you know a NEW housing community for adults with intellectual and developmental disabilities is being built in Washtenaw County?" 

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

From Kerry at Many Hands LC <kerry@manyhandslc.org>

A Place for Living & Learning for the Disability Community! 

Monday July 10 from 6:30-7:30 at WISD’s Teaching and Learning Center, 1819 South Wagner Rd., Ann Arbor.

We are looking forward to seeing you tomorrow, Monday July 10 from 6:30-7:30 at WISD’s Teaching and Learning Center, 1819 South Wagner Rd., Ann Arbor.
In person is best, if time allows we will be going to the land in Dexter.

Zoom link: https://us06web.zoom.us/j/86964357976?pwd=RnZpQmJveWN6NmhoZG9zb3FtVjkwZz09 Passcode995254

Did you know a NEW housing community for adults with intellectual and developmental disabilities is being built in Washtenaw County?

Many Hands Lifesharing Community envisions adults with developmental disabilities, their families and caregivers living full, healthy and meaningful lives connected to others.

We are creating an amazing place to live and learn, regardless of ability!

A UNIQUE IMPACT ON OUR COMMUNITY:

In addition to providing residents and their caregivers with a wonderful place to live,
the larger disability community will be welcomed onto campus to help fill a large gap in need for on-going learning and leisure activities.

SOME OF THE PLANS AND PROGRESS YOU’LL HEAR ABOUT on JULY 10:

The 85 scenic acres under contract on Baker Road on the outskirts of Dexter, and An Angel donor has committed almost 2 million dollars to purchase the land!

• Plans underway for a fully accessible, sustainable community with family-style homes for residents and caregivers
• Quality of Life, Lifelong Learning and Community Connectedness...through walking trails, a craft house, gymnasium, performing arts center and a cafe (that will welcome the public!)
• The organic regenerative farm (with animals!) for meaningful resident activities, and engagement opportunities for the greater community

__________________________________________________________________

We hope you’ll join us!
Monday, July 10 @ 6:30pm
WISD’s Teaching and Learning Center
1819 South Wagner Rd., Ann Arbor, MI  48103
Vogel Rooms A & B

__________________________________________________________________

Kerry Kafafian
Board Chair for Many Hands Lifesharing Community
734-355-0991
Kerry@ManyHandsLC.org
www.ManyHandsLC.org

2023 Disability Policy Webinar Series from the ARC Michigan

The ARC Michigan is sponsoring a two-part Webinar on Disability Policy 2023. The first session was held on June 9, 2023. The second session is scheduled for Friday, June 16, 2023. A recording of the Webinar and written handouts are available for the first session. A recording and handouts for the second session will be available after Friday, 6/16/23.

During the first session, Emily Henderson, Government Affairs Consultant, gave a broad overview of state issues and a rundown of who is who in state government. David Goldfarb covered federal policy and issues regarding Long-Term Supports and Services. The second session focuses more on Home and Community Based Services and the federal settings rule.

Although I disagree with some of the policies that the ARC Michigan promotes, I found the Webinar to have plenty of useful information and food for thought.

June 9, 2023
9:00am – 10:00am

Emily Henderson, 
Government Affairs Consultant
McCall Hamilton Advocacy
& Public Affairs

Emily Henderson is a government affairs consultant at McCall Hamilton, Lansing’s only all-female lobbying firm. Following graduation from Michigan State University’s James Madison College, Emily joined the team and began working closely on state legislative and regulatory health and human services issues as well as grassroots and coalition advocacy.

In this presentation, Emily will discuss Michigan’s new political landscape and provide an advocacy update on all of the items the Arc Michigan is following in Lansing. Emily will also share what it means to be an effective advocate and how to connect with your legislators.
 
10:30am – 11:30am

David Goldfarb
, Director of Long-Term Supports and Services Policy
The Arc of the United States

David Goldfarb is The Arc of the United States’ Director of Long-Term Supports and Services Policy. Prior to joining The Arc, he spent nearly 8 years at the National Academy of Elder Law Attorn eys (NAELA), where he oversaw NAELA’s advocacy initiatives. He currently co-chairs the Disability and Aging Collaborative and the Consortium for Constituents with Disabilities (CCD) Financial Security & Poverty Task Force. He began his public policy career as the Economic Policy Fellow for Senator Bill Nelson of Florida.
 
June 16, 2023
9:00am – 10:00am

Belinda Hawks, 
Director of Home and Community Based Services
& Lyndia Deromedi
, Manager of Federal Compliance Section, Division of Adult Home & Community Based Services, Behavioral and Physical Health and Aging Services Administration 

Belinda Hawks has given 30 years to working in the Michigan Behavioral Health system as a provider of services, in a community mental health organization, and the last 9 years at the state in the Bureau of Specialty Behavioral Health Services.

She will provide us with updates from MDHHS – Behavioral Health on Conflict Free Access and Planning and Implementation of the Home and Community Based Services Rule.

Lyndia Deromedi is the manager of the Federal Compliance Section in the Adult Home and Community Based Services Division and has been in this role for almost 3 years.

The Federal Compliance Section oversees the Habilitation Supports Waiver [for people with developmental disabilities] and 1915(i)SPA services for adults receiving Medicaid behavioral health services. This includes the oversight of the site review process, person-centered planning, self-determination and the Behavioral Health Home and Community Based Services (HCBS) rule implementation. Lyndia has been working in the Michigan behavioral health system for over 25 years.

Lyndia will provide an update of the HCBS rule implementation for behavioral health services in Michigan.

Click Here for more information on Home and Community-Based Services Program Transition
 
10:30am – 11:30am

Lindsay McLaughlin & Phillip Kurdunowicz
Bureau of Children’s Coordinated Health Policy & Supports, Behavioral and Physical Health and Aging Services Administration

Links to Webinar recordings and written materials are here.

WOW! Michigan increases dental benefits for adult Medicaid recipients!

This is from the Michigan Department of Health and Human Services: As of 4/1/2023, the  State has expanded dental services and now reimburses dentists at 100% of the Average Commercial Rate for Medicaid beneficiaries

I missed this. My son Danny, who passed away last October, was most in need of this. As his seizures increased and other disabilities became more debilitating for him, his safety outside of a hospital setting could no longer be assured. For a number of years, I was so disgusted by the Medicaid dental care that was available to him that he went without. I don't think he ever had a cavity and there was no indication that he was having dental problems, but he required sedation for his teeth to be examined and X-rayed. The Medicaid provider was not willing to do this without putting us through a long period of proving he needed sedation and making us wait for extremely long periods of time for appointments. My son Ian, on the other hand, is surprisingly amenable to having a private dentist and dental hygienists clean his teeth, do X-rays, fill cavities, etc.

I'm sure it will take time for this to have full effect, especially in persuading dentists to take on difficult-to-care-for patients with disabilities, but it is very encouraging.

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MDHHS expands dental benefits for Medicaid beneficiaries
April 03, 2023

To improve access to dental services, the Michigan Department of Health and Human Services (MDHHS) has expanded dental benefits for adult Medicaid beneficiaries and increased rates for dental providers. This redesigned benefit will directly help beneficiaries by increasing access to services, enhancing care coordination and improving health outcomes. Benefit enhancements and service delivery began April 1.

“This positive change recognizes the strong correlation between oral and physical health outcomes,” said Elizabeth Hertel, MDHHS director. “With better services and closer care coordination, we can maximize opportunities to create healthy outcomes for beneficiaries of all ages while also expanding the number of providers so Michigan’s residents can get care where and when they need it.” 

The $85.1 million investment in increased reimbursement and $30 million in redesigned benefits will not result in any loss of services, and many recipients will have new services added. For beneficiaries who are 21 years and older, the following services will now be covered:

    •    X-rays
    •    Teeth cleanings
    •    Fillings
    •    Extractions
    •    Dentures
    •    Deep teeth cleanings (New)
    •    Sealants (New)
    •    Root canals (New)
    •    Crowns (New)
    •    Care to keep your gums healthy (New)
 
Changes reflect input from a broad array of stakeholders and lessons learned from the Healthy Michigan Plan and Pregnant Women dental programs. In addition to the expanded services, MDHHS has made changes to improve beneficiary access and provider participation, as well as expand access to robust care coordination services that ensure beneficiaries are supported in accessing the services they need. 

As a first step in the redesign, a policy that substantially increased reimbursement rates for Medicaid dental services was implemented Jan. 1, 2023. Providers are now being paid at 100% of the Average Commercial Rate, ensuring access and incentivizing providers to treat Medicaid beneficiaries.

“The reimbursement rates for providers were very low under the old adult dental Medicaid program,” said Dr. Vince Benivegna, President of the Michigan Dental Association. “Dentists would lose money by treating adult dental Medicaid patients. As small business owners this was not sustainable. The new rates recognize the value of quality care and will allow more dental health providers to treat Medicaid patients.”

Medicaid beneficiaries will not lose any dental care benefits with these changes; however, the way services are delivered may change slightly. Medicaid beneficiaries aged 21 years and older, including Healthy Michigan Plan beneficiaries and pregnant women who are enrolled in a Medicaid Health Plan, Integrated Care Organization or Program of All-Inclusive Care for the Elderly will receive dental benefits through their health plan. The health plan becomes responsible for the beneficiary’s dental services obtained through the health plan’s dental provider network. The health plans will continue to provide robust care coordination and ensure that beneficiaries are supported in accessing the services they need.

Dental services for beneficiaries who are not enrolled in a health plan will be provided through the Medicaid FFS program.

For questions, beneficiaries can call the Beneficiary Help Line for free at 800-642-3195 (TTY: 866-501-5656) or send an email to beneficiarysupport@michigan.gov.

Providers can call 800-292-2550 or email providersupport@michigan.gov.

Canadian wildfires cause breathing problems in Michigan

I am jumping in here after too many months of silence on my blog with a report on poor air quality in Southeast Michigan. This is one of those issues that can leave people with disabilities and their families especially vulnerable to bad health effects. The Detroit Free Press covers this story in an article by Christina Hall, "Smoke from Canadian wildfires creates respiratory hazards for southeast Michigan residents", 6/7/23. The article includes a survey of local health systems that are experiencing increases in emergency department visits along with expert advice on how to avoid the worst health outcomes from poor air quality:

"Dr. Lawrence MacDonald, chief of pulmonary medicine at DMC Huron Valley-Sinai Hospital in Commerce Township, said most people shouldn’t be affected because their body can handle added dust or allergens in the air.

"However, these air conditions can exacerbate respiratory issues, especially asthma or chronic obstructive pulmonary disease.

"'You can end up sick. You can end up wheezing and coughing and short of breath. If you’re sick to begin with, you could end up in the hospital. So, the best therapy would be it’s always best to avoid things that trigger lung disease,' MacDonald said." 

...

"The Southeast Michigan Council of Governments recommends people and businesses do what they can when high levels of ozone are expected, because breathing high concentrations of ozone can cause health problems, particularly for elderly people, children and people with asthma or other respiratory issues."

Here are SEMCOG's recommendations:

• Delay mowing lawn until evening or the next day.
• Avoid refueling your vehicle during daylight hours.
• Drive less, telecommute, bike or walk.
• Delay or combine errands to reduce traffic congestion and air pollution.
• Reduce electricity use. Adjust your thermostat a few degrees higher and turn off lights, computers and other electrical devices when not in use.

Another piece of advice from the CDC (U.S. Centers for Disease Control and Prevention) is to wear an N95 mask, as recent research found those masks reduced hospitalizations from wildfire smoke by 30%.

I will not point out the irony of opponents of mask-use during the COVID pandemic, who, because of their own health vulnerabilities, are donning masks and staying indoors, except to assure everyone that these warnings are not a hoax!