March 18, 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
VOR's Legislative Initiative, 2022

Sunday, May 15, 2022
2 - 5 pm EDT / 1 - 4 pm CDT / Noon - 3 pm MDT / 11 am - 2 pm PDT
On Zoom

This year's initiative will focus on the diversity of individuals within the I/DD population, the need for a full continuum of care, and need to ensure parity for all services - ICF, group home, family home, or intentional community - to meet the needs of all people with I/DD and to allow families to choose from a full rang of options.

As always, our Legislative Initiative is geared to helping you become a better advocate for your loved ones with I/DD. We will help our participants to arrange meetings with Congressional Staffers via Zoom, help our members to understand how to use Zoom if they need it, and give you the advance materials and tools to make a strong presentation.
The Sunday Initiative will help prepare you for your meetings with Congressional Staffers. It will be followed by individual and group Zoom meetings with Congressional Offices
May 16 - 19,
with follow-up meetings during May and June while Congress is in session.

Registration starts soon!
March is
Developmental Disabilities Awareness Month

This is a great time to spread awareness of your loved one, their disability, and the environment in which they live, learn, or work.

It's a great time to reach out to your elected officials and invite them to meet your family member with I/DD and tour the facility they call home, see them at school or in their day program, or visit the facility at which they work with the benefit of a 14(c) certificate.
VOR's Annual Meeting

Celebrate VOR's 39th Year of Family Advocacy

Sunday, June 12, 2022
On Zoom
Due to the ongoing Covid pandemic and the continued lock down of many congressional offices in Washington, D.C., we are holding our annual events online via Zoom again this year.
We ask members to please mark the datesin your calendars.

More details coming soon.
National News:
Back Door Legislation

Congressional legislation to eliminate 14(c) vocational opportunities for people with I/DD has stalled in the House and the Senate. The Raise the Wage Act (H.R.603 & S.53), the Transformation to Competitive Employment Act (H.R.2383 & S.3238) have stalled in the House and Senate. Those responsible for those bills, Rep Bobby Scott (D-VA) and Sen. Bob Casey (D-PA) then tried to include legislation in the Build Back Better Act that would give grants to states to create programs for Competitive Integrated Employment on the condition that any state receiving the grant must phase out its 14c programs over the course of five years.

That legislation failed.

Now, suddenly, the Department of Education has introduced a $167 Million grant program to award monies to states that create programs for Competitive Integrated Employment on the condition that any state receiving the grant must phase out its 14c programs over the course of five years. The grants have been promoted by none other than Rep Bobby Scott (D-VA) and Sen. Bob Casey (D-PA).

One can only wonder why these employment issues are being handled by the Department of Education, and not the Department of Labor. Nonetheless, this is an example of back room deal-making and back door legislation at its worst.

Biden Names Picks To Serve On Disability Committee
By Shaun Heasley, Disability Scoop, March 15, 2022

President Joe Biden is tapping a group of self-advocates, family members and professionals from across the country to advise him on the needs of people with intellectual disabilities.

The president said he will appoint 20 new members to the President’s Committee for People with Intellectual Disabilities.

The panel, which originated in 1966, advises the president and the secretary of health and human services. In addition to citizen members, 13 federal officials including the secretaries of the Departments of Health and Human Services, Education, Labor, Housing and Urban Development, Commerce, Transportation, Interior and Homeland Security as well as the attorney general are part of the committee.

Typically, the President’s Committee for People with Intellectual Disabilities meets twice a year, but under the Trump administration some lawmakers raised concerns that the panel was less active. According to the committee’s website, the last meeting was held in March 2019 and the committee has not issued any reports since 2017.

New appointments to the committee include Shawn Aleong, a Temple University student with cerebral palsy and intellectual disability, and Jordyn Zimmerman who is described as a nonspeaking autistic who recently earned a graduate degree. Biden also selected professionals like Nick Perry, the sibling of a man with intellectual and developmental disabilities who serves as the disability inclusion expert for Boeing, and Paul Aronsohn, sibling to a sister with disabilities and New Jersey’s statewide Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families.

Waiting Lists For IDD Services Balloon
By Michelle Diament, Disability Scoop, March 14, 2022

A new report is painting a grim picture of intellectual and developmental disability services nationally as labor shortages and other factors mean individuals in this population are struggling to access supports in the community.

The number of people with developmental disabilities who are on waiting lists for home and community-based services grew by nearly 117,000 since data was last reported in 2020. And, with pressures from COVID-19 leading many service providers to shut down offerings or turn people away, the level of unmet need is likely much greater, according to an analysis released this month by United Cerebral Palsy and the American Network of Community Options and Resources, or ANCOR.

The annual report known as the “Case for Inclusion” assesses 80 different metrics to evaluate how well states are assisting people with intellectual and developmental disabilities in the community.

Increasingly, large, state-run institutions are shuttering, the report found. By 2018, 16 states and Washington, D.C. had closed all such facilities, most recently Montana and Tennessee.

Meanwhile, however, data shows that nearly 590,000 people remain on waiting lists for home and community-based services nationally, more than 78% of whom reside in just five states — Texas, Ohio, Louisiana, Florida and Illinois.

Among people with intellectual and developmental disabilities who are receiving employment or day supports, the report indicates that just 1 in 5 are participating in integrated employment, a circumstance that appears heavily dependent on where they live. While more than half of adults in this population were receiving help to find a community-based job in Washington, Oklahoma, Oregon and Rhode Island, 10% or fewer were receiving similar support in Hawaii, Texas, Illinois, Florida and New Jersey.

Underlying many of these issues are persistent staffing challenges, which have been exacerbated by the COVID-19 pandemic, advocates say. Findings from the report show that at the close of 2020, one out of every eight full-time direct support professional positions across the country was unfilled, a 45% increase over the previous year.

MACPAC - March 2022 Report to Congress on Medicaid and CHIP

MACPAC, the Medicaid and CHIP Payment and Access Commission, issued its March report, which includes information on transitioning Medicaid beneficiaries out of institutions and back into the community under the Money Follows the Person (MFP) demonstration program.

VOR's Hugo Dwyer and Together for Choice' Scott Mendel were both interviewed for the report, though their concerns about MFP were not represented in the final product. Those concerns included the erosion of the ICF system and the denial of choice in residential settings that has resulted from the MFP progarm being used by state governors and legislators to force closure of ICFs, and the insufficient amount of time for people to return to ICFs if the HCBS placement fails to meet their needs.

Donate To VOR Today!
The above articles should make it clear that the families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

VOR Is That Voice.

This year, our Executive Director Hugo Dwyer, our legislative policy advisor Gayle Gerdes, Presidents Sam Friedman and Harris Capps, and members of the VOR Board of Directors have had over fifty 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 need your support

Please donate today to help us continue our advocacy and to speak out for those who have no voice.

State News:
Virginia is still failing people with disabilities, say families who are pleading for lawmakers to ‘see’ them
By Theresa Vargas, Washington Post, March 16, 2022

Loretta Twyman hasn’t let her sister know the extent of her worries. She’s only told her they need help — and they need it soon.

“Libby, I got to go back to work in April, and I can’t leave you by yourself,” Twyman recalls saying to her sister, Elizabeth King, who is 62 and has intellectual and developmental disabilities.

For the last decade, the two have lived together in a house in Loudoun County and Twyman, who is 60, wouldn’t change that. She made a promise to her parents long ago that she would always take care of her sister and she plans on keeping her word.

During the pandemic, Twyman has been able to work from home, an arrangement that has allowed her to help her sister who has experienced health challenges that have left her unable to get around without a walker or take care of some of her basic needs without assistance. But in a few weeks, Twyman will have to return to an office building, where she works as a procurement specialist for a government contractor. That deadline has left her facing a difficult reality: She can’t afford to lose her job. She can’t afford to pay someone to watch her sister. And she can’t afford to leave her sister alone and risk something happening to her.

Twyman recently applied for a developmental disability waiver from Virginia for her sister that, if granted, would allow King to pay someone to assist her during the day. The family is placing their hopes in that waiver. They also know more than 13,000 people in the state are already waiting for one.

In 2012, the U.S. Justice Department found that Virginia was violating the Americans With Disabilities Act by not providing services to individuals with intellectual and developmental disabilities in the most integrated setting appropriate to their needs. A court-monitored settlement called for the state to make changes that would lessen its dependency on institutional settings and allow more residents to receive services at home and in their communities.

But a decade later, families, disability rights advocates and service providers say the state continues to fail thousands of residents, leaving them lingering on wait lists and unable to pay competitive wages to aides who are leaving for other jobs. Recent weeks have seen Virginians write letters that describe proposed budgets by the House and Senate as falling short and call on lawmakers to do more for residents who have already been waiting too long for progress.

“The overall goal of the settlement was to build a viable, robust community-based system, and we don’t have a viable, robust system,” Tonya Milling, the executive director of the Arc of Virginia, says. “A decade later, we haven’t gotten very far in really providing services for people in the community.”

Indiana - Family of severely autistic Evansville woman files wrongful death lawsuit
By Houston Harwood, Evansville Courier & Press, March 15, 2022

An Indiana home health care company is being sued for negligence after the death of an Evansville patient. It faced a similar lawsuit in 2015, according to court records.

Robin Phillips, a 28-year-old woman with severe autism, died in January 2020 while in the care of her Compass Residential home health aides. Prosecutors last week charged three Compass employees in connection with Phillips' death.

The Phillips family's lawsuit contains similar allegations to those put forth in one filed by the estate of Danielle Deming, who died in 2015.

Deming's estate accused Compass Residential of failing to "comply with applicable standards of care," which resulted in Deming's death. The lawsuit was settled out of court for an undisclosed amount of money in 2017, according to court records.

Deming suffered from mental and physical disabilities. While under Compass Residential care in 2015, she underwent outpatient surgery to have her tonsils removed. One day after her surgery, Deming died in her home from an overdose of the painkiller hydrocodone, which was prescribed following Deming's surgery. 

Court records state she was under the care of Compass Residential employees at the time of her death.
The lawsuit filed by Phillips' estate alleges Compass Residential employees acted with negligence when they refused to take Phillips to the emergency room after she suffered potentially lethal side effects from prescribed medication.

According to court records, Phillips' family is seeking compensation "commensurate with (Phillips') injuries and damages." No specific amount is listed.

Vanderburgh County prosecutors charged three Compass employees with negligence resulting in catastrophic injury in the case. Latavia M. Booker, 20, Victoria D. Brown, 32, and Glenda R. Fields, 38, each face two counts of neglecting a dependent resulting in catastrophic injury. 

The women are being held in the Vanderburgh County jail, each in lieu of a $150,000 bond.
The Vanderburgh County coroner determined Phillips died from an overdose of the anti-psychotic medication chlorpromazine, as well as caretaker malfeasance.

Investigators believe Phillips had been dead for several hours by the time her care team called for an ambulance on Jan. 4, 2020.

Compass Residential is a private health care provider based in Carmel, Indiana. The firm receives public money through an Indiana Medicaid program.

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