September 23, 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.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities



September 27, 2022

4 pm Eastern / 3 pm Central / 2 pm Mountain / 1 pm Pacific

VOR's next Quarterly Networking Meeting will take place on the afternoon of September 27th on Zoom. The topic this time will concern the challenges our families face when their loved ones with I/DD require hospitalization. 

To register for the meeting, just email us at [email protected] with the subject line "Networking Meeting". Please include your full name and the state where you live. We will email you the link to the Zoom meeting.

VOR's Fall Membership Campaign

For nearly forty years, VOR has spoken out in support of high quality care and human rights for all people with intellectual and developmental disabilities, complex medical conditions, and autism.

For nearly forty years, VOR has supported a full continuum of care and true

person-centered planning, based not on a monolithic ideology of community living,

but on the needs of the individual.

For nearly forty years, VOR has supported CHOICE

in all forms of residential care, day program activities, and employment.


In order to support choice, we have to make sure that:

  • Our elected officials in the Senate and House of Representatives vote for laws that reflect the needs of all members of the I/DD community

  • That Federal Agencies under the jurisdiction of the Executive Branch, including the the Department of Health and Human Services (HHS), Center for Medicare and Medicaid Services (CMS), Department of Justice (DOJ) and Administration for Community Living (ACL) all fulfill their obligation to equitably meet the the needs of everyone who relies on their services

  • Our state and local governments administer services to cover the full range of needs of their residents with I/DD and their families

  • State agencies with federal authorization like DD Councils and Protection and Advocacy Agencies all enforce their mandates without preference or prejudice

  • That the courts protect the rights of people to determine the setting that is best suited for their needs,"recognizing that, on a case-by-case basis, that setting may be in an institution.” (Amicus brief from VOR, cited in Olmstead v. L.C. 1999 on p. 605)


As we do each year, we reach out to our members and ask that they reach our to friends, family, and other families with loved ones with I/DD and ask them to join the community that is VOR.

This year, we are hoping to expand our base, and include more people whose loved ones receive services in private ICFs or through home and community-based services, or who participate in14(c) Employment Programs. 

This is a great time to give a gift membership to someone who feels as we do, that everyone with I/DD and autism deserves to live their best life in the setting of their choice, acknowledging that for some individuals, on a case-by case basis, that setting may be a group home. (LOL)

Click here to help support our mission

National News:

New Proposal In Congress Would Remove ‘Mentally Retarded’ From Federal Law

By Michelle Diament, Disability Scoop, September 19, 2022

Years after the term “mental retardation” was stripped from many federal statutes, numerous references to “mentally retarded” remain. Now, a bipartisan group of lawmakers wants to change that.

A bill introduced late last week in the U.S. House of Representatives would replace language that many with disabilities find offensive in more than two-dozen instances in the U.S. Code.

The move comes more than a decade after passage of Rosa’s Law, which removed “mental retardation” from federal health, education and labor policy in favor of “intellectual disability,” but failed to address references to “mentally retarded,” according to lawmakers behind the latest effort.

The new legislation known as the “Words Matter Act,” or H.R. 8863, would update laws referencing “mentally retarded” as well as some cases where “mental retardation” remains with the terms “intellectual disability” or “intellectual disabilities” instead.

“This bill just makes sense,” said Rep. Mark Pocan, the bill’s lead sponsor. “Federal law should reflect the time in which we live and not include harmful words or slurs. The Words Matter Act will modernize our laws, and remove offensive language from the U.S. Code. … I look forward to this bill’s immediate passage so we can retire this language once and for all.”


For more information on the use of language in political thought, please refer to Merriam-Webster

In First, Feds Issue National Strategy To Support Family Caregivers

By Michelle Diament, Disability Scoop, September 22, 2022

Federal health officials are putting forth a national strategy to address the needs of family caregivers, acknowledging the challenges faced by millions who care for people with developmental disabilities and other issues.

The first-of-its-kind plan details 345 actions that 15 government agencies will take in the next three years as well as over 150 actions that can be undertaken by states, communities and other stakeholders.

“Supporting family caregivers is an urgent public health issue, exacerbated by the long-term effects of the COVID-19 pandemic,” said U.S. Secretary of Health and Human Services Xavier Becerra. “This national strategy recognizes the critical role family caregivers play in a loved one’s life.”

There are estimated to be some 53 million family caregivers in the U.S. supporting those with developmental disabilities, individuals who are aging and others. They “provide the overwhelming majority of long-term care” in this country and, if replaced by paid caregivers, their services would cost an estimated $470 billion annually, according to the Department of Health and Human Services.


Please note: VOR strongly encourages federal support for family caregivers, but not as a replacement for other forms of care or as a substitute for the care of Direct Support Professionals. We encourage our federal health officials to act decisively to fund DSPs and end the crisis-level shortage of professional caregivers they have helped create.

Education Department Awards $177 Million in New Grants to Increase Competitive Integrated Employment for People with Disabilities

Press Release, U.S. Department of Education, September 21, 2022

Today, the U.S. Department of Education’s Rehabilitation Services Administration (RSA) announced new five-year grant awards for the Subminimum Wage to Competitive Integrated Employment (SWTCIE) demonstration project to 14 state vocational rehabilitation (VR) agencies. The purpose of these grants is to decrease the use of subminimum wages and increase access to competitive integrated employment for people with disabilities.

These VR agencies will receive funding from the Disability Innovation Fund (DIF) to support increasing access for people with disabilities to jobs that pay good wages.

“President Biden always says that a good-paying job is about more than a paycheck, it’s about dignity,* and that’s why we can no longer accept a status quo in which so many individuals with disabilities are segregated from the workforce and relegated into poverty-wage jobs that offer no pathway to higher earnings,” said U.S. Secretary of Education Miguel Cardona. “Our Real Pay for Real Jobs Initiative is about building a more equitable, inclusive workforce that thrives on the talents of Americans of all abilities. These grants will support innovative efforts underway across the country to provide educational opportunities to youth and adults with disabilities so they can secure better-paying jobs, build economic security, and lead more fulfilling, independent lives.”


*Actually, in his August 20, 2020 speech to the Democratic National Convention, then-candidate Biden was quoted as saying, "A job is about a lot more than a paycheck. It’s about your dignity. It’s about respect. It’s about your place in your community.” We would be happy to argue that 14(c) programs fulfill these ideals for those unlikely to be accommodated in Competitive Integrated Employment programs.


State News:

Texas Pays Attendants for Disabled People $8.11 per hour, Among the Worst in the U.S.

By Alex Stuckey, Houston Chronicle, September 21, 2022

Nancy Crowther worries every time her personal care attendant leaves the house.

She worries that her attendant will see the Dairy Queen banner boasting $16 an hour flapping in the wind on her drive to the grocery store and be tempted to apply.

Worries that the taco place down the street promising $17 an hour will catch her eye.

Worries that she’ll find something better than the $11 an hour she’s paid to keep Nancy alive.

Nancy, 64, has a progressive neuromuscular disease that is slowly eating away at her muscles.

It started with her legs, which have largely been rendered useless since childhood. It’s spread to her arms, which are no longer strong enough to hold a pan or reach a light switch without assistance.

Without her attendant’s help, Nancy would have to give up her home and live in a nursing facility.

“I’m really scared about it,” Nancy said. “If I had to give up my home because I didn’t have attendant services … there’s no reason to go on.”

Nancy is one of more than 300,000 Texans who receive help with tasks such as bathing, dressing and toileting from attendants through long-term services and support programs in the state. This help allows them to continue to live and remain active in the community.

Many of these individuals receive care through one of the state’s six Medicaid waiver programs for people who have disabilities, which use state and federal funds to get people care in the community instead of in an institution. A Houston Chronicle investigation published in July found that there are nearly 200,000 Texans waiting for one of these waivers — and some have waited for nearly 20 years.

Others receive attendant services through non-Medicaid services such as the Consumer Managed Personal Attendant Services program.

But even after getting that funding, getting the actual care can be a difficult task.

Personal attendants in Texas are paid a base hourly wage of $8.11, an amount that has left the state with a crisis-level shortage of attendants — especially as the number of Texans needing them is expected to grow by nearly 95,000 by 2028, according to a report published this year by the Coalition of Texans with Disabilities.

“Finding individuals to fill these jobs, and stay in them, is tremendously challenging at the low wages Texas pays, and demand for community attendants is already outgrowing the supply,” the report states. “Crises can occur, and often do, when people can’t find the care they need for themselves or a family member.”

At $8.11 an hour, Texas is way behind nationally.

Across the U.S. , the average pay for home and personal care aides in 2021 was $14.15 an hour , or less than $30,000 a year, according to data published in May 2021 by the U.S. Bureau of Labor Statistics.

During next year’s session, advocates plan to push for an increase to $17 an hour by fiscal year 2025.

The price tag would be in the billions. But research shows it’s a significantly cheaper option than sending someone like Nancy to a nursing home.

Read the full article here

Missouri - Developmental Disabilities Care Providers Celebrate Record Funding

By Julie Koharik, KOMU 8, September 22, 2022

The Missouri General Assembly appropriated $955 million to help increase rates for health care providers. That money will go toward a wide range of care providers, including nursing facilities, behavioral health facilities and developmental disability care.

Gov. Mike Parson's plan ensures frontline workers are paid a minimum of $15 per hour. The owner of Day Solutions, a day program for adults with developmental disabilities based in Jefferson City, says they've been struggling with the state rates for years.

"We were working with a rate that paid our direct care staff at $8 an hour minimum wage, which isn't even what minimum wage is anymore," Danielle Schwartz said. "It's life changing, for our clients, for our staff."

Schwartz said the provider has previously had to cut costs elsewhere to pay their staff above minimum wage. 

"It's made us hesitant in the past to expand," Schwartz said. "It's difficult to make sure that you can cover all of your bases with rent, and the vehicles that we need, and the materials, providing the medical care."


Maine - Mills Directs $11 Million to Services for Adults with Intellectual Disabilities

An advocate says the funding is appreciated, but represents a short-term fix. 

By Joe Lawlor, Portland Press Herald, September 22, 2022

The Mills administration is directing nearly $11 million in federal funds to boost long-struggling services for adults with intellectual and developmental disabilities.

The American Rescue Plan aid comes on the heels of recent group home closures and cuts to in-home services, caused by low reimbursement rates combined with a workforce shortage.

“My administration is committed to supporting the independence of Maine people living with disabilities, and this additional round of funding will help to ensure they can continue to live in the homes and communities they love,” Gov. Janet Mills said in a statement Thursday. “This funding will also support the direct care workers who dedicate themselves to providing around the clock, high quality care to people across the state.”

But Laura Cordes, executive director of the Maine Association for Community Service Providers, which lobbies on behalf of the nonprofit agencies that provide the services, described the funding as a short-term fix.

“The funding is much needed and appreciated, but only helps to address the agency home support (and) group homes service rate shortfall for the short term,” Cordes told the Press Herald.

In 2021, the Maine Legislature approved raising pay for direct care workers to 125% of the minimum wage, but didn’t fund the increase in the state budget. So nonprofits were expecting an influx of money earlier this year, earmarked for worker raises, that never came.

Jackie Farwell, Maine DHHS spokeswoman, said in an email response to the Press Herald that the Mills administrated has ensured that “rate adjustments were appropriate to support workers receiving at least 125% of minimum wage. The department has fully funded these rates.”

But Ray Nagel, executive director of the Brunswick-based Independence Association, which operates group homes and provides services for adults with intellectual disabilities, said the Mills administration changed the underlying funding formula, undermining the promise of paying workers 125% of minimum wage.

He said instead revenue coming to nonprofits has remained flat, other than the one-time influx of American Rescue Plan funding.

Cordes has said that the group home workforce shrank by nearly 30% during the pandemic, as the pay is low and people can earn more at less challenging jobs. The services are primarily funded by Medicaid with a blend of federal and state dollars.

About 2,500 people are employed in adult group homes, serving a population of about 1,900 adults with intellectual disabilities. In total, about 5,800 adults with intellectual disabilities receive some type of state services, such as day programs.

Read the full article here

New York - Plan to Study Group Home Issues Moving Ahead

By Brendan J. Lyons, Times Union, September 19, 2022

Assemblyman Angelo Santabarbara on Monday said legislation he sponsored to establish a working group to help improve living conditions in group homes for disabled individuals is moving forward and is expected to be sent to Gov. Kathy Hochul for final approval.

The working group would also examine communication between group home residents and their families, he said.


"Residents of group homes, who often have disabilities, deserve the right to weigh in on how they are being treated," said Santabarbara, who has a son with autism. "However, the COVID-19 pandemic highlighted a stark failure in communication between residents and the institutions tasked with supporting them."

In a news release, Santabarbara noted New York's COVID-19 case rate for group home residents was more than triple that of the general population.

"Reports from early 2021 indicate that well over 10,000 group home staff members had been infected with COVID-19, with a number of them becoming fatally ill," the release states. "Many of these cases were due to communication failures between residents, staff and the state Office for People with Developmental Disabilities (OPWDD)."


Massachusetts - In Establishing State Commission on Institutional Care, Legislature Ignored Committee-Approved Language Proposed by COFAR

By Dave Kassel, COFAR Blog, September 23, 2022

(COFAR Intern Joseph Sziabowski contributed to the research for this post.)

In July, the state Legislature approved the Fiscal Year 2023 budget with an amendment to establish a state commission to study the history of the former Fernald Developmental Center and other institutions in Massachusetts for persons with developmental disabilities and mental illness.

The budget amendment did not contain language proposed last year by COFAR, which would have helped ensure that the commission would not be biased against institutional care for persons with developmental disabilities.

We had expressed concern that the commission, as conceived in previously drafted bills (S.1257, and H.2090), might be used to call for the closure of the Wrentham and Developmental Center and Hogan Regional Center.

As we have reported, key proponents of the commission have promoted the closures of state-run residential care facilities, and have tried to focus public attention solely on the darkest periods of institutional care in this and other states prior to the 1980s.

The commission proponents have declined to acknowledge major improvements since the 1980s in care and conditions in the state’s developmental centers or Intermediate Care Facilities (ICFs). Those improvements were implemented largely due to the intervention of the late U.S. District Court Judge Joseph L. Tauro.

However, even after the budget amendment was approved in the Senate in May, at least some of the language COFAR had proposed was included in a redraft of one of the original bills.

The redrafted bill (H. 4961), which was approved on June 30 by the Mental Health, Substance Use and Recovery Committee, would give COFAR standing along with other named advocacy organizations to appoint some of the commission members. Each advocacy organization, including the Arc of Massachusetts, would have one appointment.

The redrafted bill also contained our suggested requirement that the commission study the wellbeing of current residents of the Wrentham and Hogan Centers. The previous versions of the legislation included requirements to study the wellbeing only of former state facility residents now living in the community.

We had opposed those previous versions of the commission bill because the versions would preclude assessments of care of current residents of Wrentham and Hogan. We think many, if not most, of those assessments would be likely to be positive.

The Senate budget amendment contains no directives for the study of the wellbeing of either former or current residents of state facilities.


Direct Support Professionals:

Please share this offer with your loved one's

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

[email protected]

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.

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. 3089 & S. 1544Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

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.


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.

Help Us Help:

Families of Individuals with

Severe/Profound I/DD and Autism

Need a Voice in Washington, D.C.

For Four Decades, 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 have engaged in over ninety 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.

Please click here to join, renew your membership, or contribute to VOR

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

  1. Just go to 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.

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

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