April 22, 2022
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

Sunday, May 15, 2022
3 - 5 pm EDT / 2 - 4 pm CDT / 1 - 3 pm MDT / Noon - 2 pm PDT
(Nofe: Times have changed from previous announcement)

Meetings w Congressional Offices
Week of May 16 - 20
We will help our participants to arrange their own Zoom meetings with
Congressional Staffers

Debriefing & Feedback Sessions on May 16 & 17,
6:30 - 8 pm EDT

This is a great opportunity to introduce your family to those who represent you in Congress!
This year's initiative will focus on the diversity of individuals within the I/DD population,
the need to ensure parity for all services to meet the needs of all people with I/DD
and to help support Direct Support Professionals in all facilities
We will help you to arrange your meetings, and if you wish, one of our Board members will sit in and help steer you though your first meetings with congressional aides.

Registration is free. Donations are welcome.
You must be a current member of VOR to participate in the Initiative

VOR's Annual Meeting & Legislative Initiate help our families to participate in our organizations, to reach out to their Members of Congress, and to become better advocates for their family members with I/DD.

Those who have attended our June meetings in years past will recall what they spent on transportation to and from D.C... what hotel rooms cost, and what other expenses they incurred while in Washington. We ask that you consider giving a share of that expense, maybe part of the cost of airfare or a night at the Hyatt on Capitol Hill,
or even the cost of a quick lunch in the Longworth Cafeteria!

Any and all contributions will be most graciously accepted.

Please help us to help you.
Please help us to help families like yours.
State News:
California - How Families Are Advocating for Children with Disabilities in Foster Care
By Claudia Boyd-Barrett, California Health News, April 21, 2022
Sheri Louie fell in love with Kristina the moment she saw her at the group home for medically fragile children in Fresno. A licensed vocational nurse, Louie had spent years working with children like Kristina who need special medical equipment to stay alive. But something about the fragile baby with expressive eyes felt unique.

“I had a connection with her. It was more like how I felt with my daughter,” said Louie, whose biological daughter, Cynthia, is one year older than Kristina. “I loved all the kids there, but I loved Kristina different.”

Kristina has cerebral palsy, autism and Moebius syndrome, a neurological disorder that causes facial paralysis. She’s one of thousands of children with physical and developmental disabilities who enter California’s foster care system each year. These children often require specialized care, therapy and education services. Because of their disabilities, they can be harder to place with a foster or adoptive family — now called a “resource family” by the state — than children without disabilities.

Yet, like Louie and her husband, Kenny, many families do foster and ultimately adopt children with disabilities. That’s despite challenges these families often encounter, such as receiving insufficient medical supplies to care for the children and incomplete information from child welfare agencies about the children’s health histories. Foster families and their advocates are working to mend the gaps in the system that can cause undue stress on these children with disabilities, who, in most cases, have already been through trying times before coming into foster care. Because the children are considered wards of the state, advocates say that California should do more to protect them and ensure their health conditions are well managed. This is also a racial justice issue, because Black and Native American children are disproportionately enrolled in foster care, due to societal inequities.

Recent efforts by the state to improve supports for foster children and resource families, as well as streamline access to services for kids with disabilities and youth with mental health needs could help. A new phone line called the Family Urgent Response System provides 24/7 phone support to foster children and their caregivers, and a mobile response team in each county can visit families in crisis. California health and social service officials are also working to implement a 2018 bill that calls for better integration of care for children in the child welfare system who are receiving services from multiple public agencies.
Theresa Mier, a spokesperson for the California’s Department of Social Services, which oversees the foster care system, noted that recent state policy reforms include an expansion of intensive services for foster youth with complex needs, and improved delivery of mental health care. The state’s current fiscal year budget includes $139 million to help counties address the needs of youth with complex needs such as physical and developmental disabilities.

The department does not compile data on the number of foster children with disabilities. However, studies estimate that about 33 percent of kids who enter foster care have a chronic health condition, and more than half of children under five in foster care have developmental challenges.
Research also shows that children in foster care are far more likely than non-foster youth to require special education services, and four times more likely to have a mental health need.

Most children in the foster care system have suffered some form of abuse, neglect or trauma. Reports suggest children born with disabilities are more likely to be abused or enter the child welfare system, and that the trauma of experiencing abuse and neglect, as well as entering foster care, can also increase the risk of health challenges. Largely due to structural inequality and racism, Black and Native American children are more than three times as likely as white and Latinx children to be in foster care in California.

Sheri and Kenny Louie ended up fostering Kristina and then adopting her. Now 7, Kristina is fully integrated into the family. The couple’s biological daughter, Cynthia, 8, has embraced her role as big sister, helping calm Kristina when she cries and holding her hand when she gets shots at the doctor’s office. An older niece, Brandi, 18, who lives with the couple, adores Kristina as well.

“She really completes our family. The girls are so bonded to her, we’re bonded to her,” said Sheri Louie. “Every single day my husband and I talk about how blessed we are.”

North Carolina - For Kids with Complex Behavioral Needs, Medicaid often Provides Better Coverage
Parents and families wrestle with private insurance companies that resist coverage and cap services. If they happen to get on Medicaid, they often find an easier path to care.

By Clarissa Donnelly-DeRoven, North Carolina Health News, April 19, 2022

When 13-year-old CJ gets mad, he gets really mad, really, really mad.

“Have you ever heard the term blind rage?” He asks on a thick spring morning in Asheville. His dog, Jake, who’s also around 13 years old, sits at CJ’s feet, waiting for another half of a biscuit.
“It’s like a movie. It’s like you’re watching it, but you can’t do anything.”

Because he is a minor, North Carolina Health News is using CJ’s initials, rather than his full name.
This anger, this rage, it forces CJ outside of his body. It stops him from seeing, feeling, or doing anything else. The only way CJ has found to push the anger out of his body, and put himself back in, is to run around, yell, scream and push people.

“Mostly teachers,” he says with a small side smile that seems less like he’s being cheeky and more like he’s covering for shame.

This rage mounted as the COVID-19 pandemic unfolded. Forced into virtual or hybrid schooling, his outbursts may not have been directed toward teachers as often, but they were still there.

Though the pandemic disrupted nearly everything in CJ’s life, it did come with one small blessing: his dad lost his job at a hotel and with it, his employer-sponsored health insurance. That meant CJ finally got onto Medicaid.

But how could getting kicked off private insurance — widely considered the gold standard of care and coverage in the U.S. — and put onto Medicaid be a good thing?

Medicaid is better for complex needs

CJ has autism, oppositional defiant disorder and disruptive mood dysregulation disorder. Kids like him often cannot get the services they need when they’re on private insurance: either the care isn’t covered at all, or an insurance company caps the number of times they can receive a service thereby rendering it useless, or the copays and deductibles make the services too expensive to access.

Attorneys who work in this field say there are many kids who fit this category, but there is no centralized screening process to figure out the actual number.

Medicaid, on the other hand, is required to provide direct access to services for kids, like CJ, who are clinically eligible. Private insurance does not have such a legal requirement.

In part, that’s because Medicaid is operated using federal funds. A provision within federal law says that any state which accepts Medicaid dollars to pay for services for people with disabilities is required to offer those services in the least restrictive environment possible, explained Joonu-Noel Andrews Coste. She’s an attorney with Disability Rights North Carolina who examines whether the state is in compliance with that federal requirement.

“That’s really the delineation between Medicaid and private insurance,” she said. “Because private insurance is not accepting those federal Medicaid funds, they are not under that Medicaid obligation.”
As far as she knows, there’s not a similar provision in federal law that applies to private insurance.

“Medicaid law basically says in a nutshell, that if a child needs a service to either make improvements, which will allow that child to be successful in life, or to not lose improvements,” Coste said, “That is a service that under the law — if a state is accepting Medicaid funds — the state must provide to that child.”

Minnesota - Group Home Closure Leaves Family Scrambling
By Alexandra Retter, Winona Post, April 20, 2022

Weighing medical needs, moving, a job and family, Laura Wait faces a consequential decision after Home and Community Options (HCO) recently announced it will close two group homes serving those with disabilities, including Wait’s son.

“Solely the decision was based on having a workforce that is able to care for the needs of … individuals that we’re supporting, and making sure we have a workforce that is adequate to be able to meet those needs,” HCO Executive Director Suzanne Horstman said. She added, “There’s not enough of a workforce to be able to support the needs.” The closure of such houses is a widespread issue related to state funding and workforce shortages.

That difficult decision meant the families of those living in the homes now face tough choices, as well. Wait’s 24-year-old son has lived in a home for about six and a half years. “He’s got a lot of medical issues … so he has to have someone one-on-one with him to take care of him,” she said. If she cannot find a place for him at another home and he returns to live with her, she would have to move, she said, as there would not be enough space where she currently lives. It would mean spending money on furniture for him, too. Additionally, it would be difficult to find a person to care for him during the day while she is at work, she said. “I’d most likely lose a job I’m good at and love,” she said.

Finding a place at another home may also not be a great option, Wait said. Moving would be trying for her son, she said. “He does not transition well,” she said. She and her son are also highly connected to the area, so her first choice is to stay here. “This is where our family is at,” she said. She continued, “For my son, it’s become home.”

Wait said it may be hard to find a spot at another home in the first place, as organizations like HCO struggle with staffing shortages and funding. HCO is not alone; Cardinal of Minnesota announced it would close 10 of its homes in March, the Star Tribune reported. Other homes and day programs throughout the state are also closing because of staffing issues.

Connecticut - Home Care Workers Finally Have Something To Celebrate
By Christine Stuart, CT News Junkie, April 20, 2022
Connecticut’s home care workers, who have struggled without a contract since last summer, are celebrating today.

After almost a year of negotiations, the state has agreed to give the 10,000 workers a pay increase, health insurance, and even paid time off.

The workforce, which is mostly women –predominantly women of color, take care of 6,000 of the state’s most vulnerable residents in their homes and are paid by the Department of Social Services and the state Department of Developmental Services through Medicaid funding.

“Here today, we have taken more than a giant step,” Suzanne Clark, secretary treasurer of SEIU Healthcare 1199NE, said during a Wednesday rally at the state Capitol building. “We have revolutionized — to be able to have finally [paid time off], finally have a pathway and not just a foot in the door but a big foot in the door for health insurance and PTO for home care workers across Connecticut.”

At a protest outside the governor’s residence last month, Brenda Glazier, who cares for a man with a traumatic brain injury, said her house is in foreclosure and over the past year she’s had to work through COVID-19 because she had no sick days.

“We’re caring for people who have health insurance and we don’t,” Glazier said.

She said if they get sick they can’t take time off because they don’t get paid. Since federal funding for COVID-19 sick days for these workers ran out at the end of September, anyone who took time off to recover from the virus didn’t get paid, union officials said.
These workers, unionized through SEIU 1199, have been making $16.25 an hour and have not had any sick days or health insurance throughout the pandemic. They’ve also been unable to go on strike since they care for individuals in their homes.

The home care workers will receive a 6% bonus on wages that’s retroactive to April 1, 2021. They will also receive three pay increases until they reach $18.25 an hour by 2023. And they will be eligible for premium assistance for health insurance that’s equal to 6% of their annual income. Finally, they will receive up to 80 hours of paid time off.

Diedre Murch, vice president and director of home care for the New England Heath Care Employees Union, SEIU 1199, said a recent survey found 37% of their members are on food stamps.

“Close to 20% have medical debt close to $1,000 that’s unpaid,” Murch said.

She said by giving them a pay increase and health insurance would save the state money because fewer would qualify for these government subsidies.

National News:
Caring for Adults with Intellectual and Developmental Disabilities
By Sarah Mahoney, Assn. of American Medical Colleges, April 19, 2022

Rachel Reingold, then a third-year student at Albert Einstein College of Medicine in New York City, thought she knew plenty about people with intellectual and developmental disabilities (IDDs).

She was already an active volunteer for Einstein’s Buddies program, which allows medical students to help with the treatment of children with IDDs at the Rose F. Kennedy University Center for Excellence in Developmental Disabilities.

But it wasn’t until Reingold attended a monthly meeting of adult self-advocates with IDDs that she realized the unique health care barriers that they experience.

The patients spoke candidly about navigating the health care system. “Their critiques were so specific that we were just blown away,” says Reingold. A woman with cerebral palsy described how muscle spasticity made gynecological exams challenging. A man recalled how his doctor solely addressed his caregiver when collecting a medical history instead of the patient himself.

“We knew right away we needed to find a way to educate medical students on the appropriate clinical care of patients with IDD,” she says.

Reingold and several fellow students met with faculty members about their concerns, and the result was Einstein’s first curriculum on patients with IDDs, launched in 2019 in the school’s Introduction to Clinical Medicine course.

Similar changes are underway across the United States as awareness of IDD-related knowledge gaps and health disparities increases. More than 8 in 10 graduating medical students have no training in caring for adults with IDDs, and education about children with IDDs is minimal as well, according to Priya Chandan, MD, PhD, MPH, project director of the National Curriculum Initiative in Developmental Medicine.

Feds Reverse Course On Alzheimer’s Drug After Outcry From Down Syndrome Advocates
By Michelle Diament, Disability Scoop, April 18, 2022

After complaints of discrimination, federal officials are backing off a plan that would have kept people with Down syndrome from accessing a new Alzheimer’s treatment even though they’re predisposed to the disease.

The lifetime risk of developing Alzheimer’s disease is over 90% for people with Down syndrome, advocates say. So, when the Centers for Medicare and Medicaid Services proposed a plan for coverage of Aduhelm, a controversial new Alzheimer’s drug, advocates were aghast that the proposal precluded people with Down syndrome.

Aduhelm was approved by the Food and Drug Administration last year despite questions from many experts about how effective it truly is. However, CMS makes its own coverage decisions and since most people with Down syndrome are covered by Medicare or Medicaid, the agency’s determination is significant.

Under a proposal released in January, CMS sought to make Aduhelm available to people with Medicare only if they were participating in clinical trials, citing concerns about potential harm to patients from the treatment. People with Down syndrome and any other conditions that “may significantly contribute to cognitive decline” would be excluded from such trials, the CMS proposal said.

The Down syndrome community flooded CMS with more than 1,800 comments blasting the proposal for explicitly excluding people with intellectual and developmental disabilities. Not only would the policy prevent people with Down syndrome from accessing Aduhelm, but without clinical trial data on this population, advocates feared that doctors would lack important information to guide treatment decisions for those with the chromosomal disorder.

VOR's Annual Membership Meeting

Celebrate VOR's 39th Year of Family Advocacy

Sunday, June 12, 2022
On Zoom

Guest Speakers:
  • Jill Escher - President, National Council on Severe Autism; Escher Fund for Autism, Past President of the Autism Society San Francisco Bay Area
  • Kit Brewer - Executive Director, Project CU - St. Louis, MO; Director, Coalition for the Preservation of Employment Choice (formerly the Coalition for the Preservation of 14c)
  • Micki Edelsohn - Founder, Homes For Life; Author, “Mom with a Megaphone”

Reports from the States!
Family Networking Meeting!
Our World Renowned Cakeless Bake Sale!

As in previous years, the Annual Meeting will feature an open meeting of the VOR Board of Directors and we will reveal the results of the current Board elections.

Registration for the Annual Meeting will open in May.
April is Autism Awareness Month:
Belfast, Northern Ireland:
10 Common Myths about Autism We Need to Dispel
By Joanna Cushley, Belfast Telegraph, April 19 2022

Autism is becoming more of a familiar term in our society. So much so, that it can be hard to distinguish between what is fact and what is fiction when it comes to understanding autism. Here are some common misunderstandings about autism and the reality behind them.

Childhood vaccines cause autism
In the late 1990s, a research article was published that drew a proposed link between vaccines and autism. This caused a worldwide frenzy, but it was later proven to be inaccurate by not measuring up to scientific standards. There have been over a dozen studies carried out and none of them have found any evidence to suggest a link between vaccines and autism.

Poor parenting causes autism
There is no connection between parenting styles and autism. Autism is a neurological and developmental condition. This means that it is present from birth, but it only usually begins to show itself in early childhood when development may start to differ from other children of the same age. On other occasions, it may not become obvious until the child is much older. There is potentially a genetic element to autism, and while parenting styles can help to support the traits, they cannot cause it.

Autism is a disease
Autism is not a disease or an illness and cannot be ‘cured’ or treated with medicine. Autism is a neuro-developmental condition which is life-long and something that you are born with. With the aid of therapy and professional intervention, people with autism can live healthy, independent and successful lives.

Help Us Help:
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we engaged in over sixty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

Shop at Amazon?

Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to smile.amazon.com instead of the regular Amazon site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
VOR Bill Watch:
[Please click on blue link to view information about the bill]


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.
H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.
Direct Support Professionals:

Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377