January 28, 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

Via Zoom - February 24th
4:00 pm EST, 3 pm CST, 2 pm MST, 1 pm PST

VOR invites you to join us for our 2nd nationwide Networking Zoom Meeting!
At this meeting we will talk about the shortage of DSPs- Direct Support Professionals- those people who work directly with our loved ones. What is going on in your state or region to address this problem, which has reached crisis levels in some areas? We welcome you to share with us your concerns, advocacy efforts, progress, and ideas concerning alleviating this shortage.
At our first Networking Meeting on November 11, 2021, we had attendees from 13 states. It was fun and enlightening to meet and talk with everyone. Hope you can join us on February 24. 
Please RSVP us at [email protected] by February 20, if you would like to attend. We will send the zoom link a few days before the meeting.
VOR’s mission is to advocate for a full continuum of care for our loved ones. Many of the members of VOR have family member members with severe or profound disabilities, often with medical or behavioral issues. We support a full range of services and housing options to meet the needs of all people.
To register for the event, or if you have any questions or suggestions for future topics, please contact us at [email protected]
Coalition for the Preservation of 14c Releases White Paper

VOR has recently joined forces with the Coalition to Protect 14c, a group of advocates dedicated to preserving employment opportunities for people with I/DD for whom competitive integrated employment may not be an option.

VOR's President Harris Capps has signed on to the group's white paper, and VOR's Executive Director Hugo Dwyer, our Legislative Advisor Gayle Gerdes, and members of the VOR Board of Directors have been joining in Zoom meetings with congressional staffers to support the effort.

For more information,, please contact us at [email protected].
Direct Support Professionals:
National Alliance for
Direct Support Professionals
2022 NADSP Advocacy Symposium

March 9–10, 2022

On March 9-10, 2022, the National Alliance for Direct Support Professionals (NADSP) will embark on its first-ever national advocacy event to bring the direct support professional (DSP) perspective to the forefront of Congress and the Administration during a time of unprecedented workforce challenges. Hardships from the pandemic and recent legislation has provided new insights and opportunities for the direct support workforce that supports people with disabilities.

The NADSP recognizes the previous absence and critical importance of lifting the voices of DSPs to federal policy-makers, so that public policy can be informed by the people who are on the front-lines of supporting people with disabilities to live, work and thrive in the community. In February 2022, the NADSP will provide DSPs from all across the country comprehensive advocacy virtual training. This will lead up to a 1.5-day virtual event that will culminate with virtual meetings with Congressional leaders and staff to educate and advocate on NADSP’s public policy priorities for 2022.
Advocacy Symposium and Legislative Meetings Training
  • Wednesday, March 9th, 2:00 p.m – 5:30 pm ET
Legislative Meetings
  • Thursday, March 10th, 2022
  • After registering, all individuals will receive a confirmation that they have registered. Final meeting times will be shared on March 4th from Soapbox Consulting. Please note that your meeting time will depend on your Zip Code and Congressional District.

For more information, including a detailed schedule of events, along with the expectations of attendees, please Click Here
State News:
Texas is Short Thousands of Workers at State Health Facilities
By Becky Fogel, Houston Public Media, January 28, 2922

The Texas Health and Human Services Commission is trying to fill about 3,000 open positions by offering signing bonuses for certain medical staff such as registered nurses.

State hospitals and state-supported living centers are facing a staffing shortage worsened by the COVID-19 pandemic, which has Texas health officials looking to fill about 3,000 positions.

The Texas Health and Human Services Commission is trying to fill positions in 24 locations across the state, including some in Austin, El Paso, Corpus Christi, Richmond and San Antonio, offering hiring bonuses for certain positions at each site.

"Everybody is trying to get nurses, with COVID and everything else," said Scott Schalchlin, deputy executive commissioner for the agency's Health and Specialty Care System. "We wanted to really focus on how we can get attention drawn to the state-supported living centers and the state hospitals."

State hospitals provide inpatient psychiatric care for children and adults. State-supported living centers offer residential services for people with intellectual and developmental disabilities.

There are certain roles Schalchlin said are crucial to regular health care service. Registered nurses can qualify for $5,000 hiring bonuses, while licensed vocational nurses could receive $3,500. HHSC is also offering hiring bonuses for psychiatric nursing assistants at state hospitals and direct support professionals at state-supported living centers.

Missouri - Huge Staffing Shortage Leaves Over 500 Disabled Missourians Waiting on Services
By Kayla Drake, St. Louis Public Radio, January 27, 2022

More than 500 Missourians with disabilities are waiting on services because of a caregiver shortage. Without proper staffing, many in-home and group home providers have stopped taking clients from the waitlist. The list has doubled since July and continues to grow.

The coronavirus pandemic spurred a hemorrhaging of workers within an already short-staffed industry. In 2019, Missouri had a 50% turnover rate in the industry. The state Department of Mental Health is working on updating statistics, but a spokesperson said the pandemic only made turnover worse. And not enough new workers are waiting in the wings.

People in the industry attribute the shortage to one main thing: a lack of competitive wages. Providers are often restricted to paying wages permitted by state-determined Medicaid reimbursement rates, and these days, fast food and retail chains often offer better pay than those rates. Missouri Gov. Mike Parson proposed a starting wage increase to $15 an hour in his budget for this fiscal year, but unless legislators approve that, direct care staff in Missouri start at $12.39 an hour.

Statewide, more than 2,000 vacancies for direct support professionals need to be filled, according to the Missouri Association of Rehabilitation Services.

Iowans with Disabilities: Key Support Areas Need Investment
By Mike Moen, Public News Service, January 25, 2022

Groups advocating for Iowans with disabilities say 2022 is a crucial year to lay groundwork for individuals to gain more independence and live stronger lives, and they hope state policymakers hear the message.

Advocates say the caregiver crisis remains a top concern, with an ongoing shortage of direct support professionals.

Brooke Lovelace, executive director of the Iowa Developmental Disabilities Council, said many industries are having a hard time attracting workers, and this area should not be overlooked.

"We know that there's a crisis with healthcare, and with restaurants and other businesses," Lovelace observed. "But we also need to make sure that they pay attention; that there's also a critical need for the community services and supports for people with disabilities."

Her group contended boosting wages for caregivers by at least 6% would help recruit and retain employees. They also suggested allowing pay for guardians and family members who provide support through Iowa's self-direction options.

As the legislative session kicked off, the governor and Republican leaders said with a budget surplus in hand, they want to focus on tax cuts.

Iowa - Opinion: Clear Iowa’s Medicaid Waiver Waitlist
Sara and Dale Todd, The Gazette, January 25, 2022

As parents of an adult son with a rare form of epilepsy and intellectual and developmental disabilities, we have learned how to weather the ups and downs of Iowa’s Medicaid program over the years. Like most stories you have heard since Iowa abruptly moved to the managed Medicaid system otherwise known as Iowa’s MCOs, we experienced some bumps along the road. Everyone agrees the transition was too much, too fast, however now that Iowa has several years under its belt, the promises of the newly created program are still yet to be realized. Iowa is not saving money; patients are not getting better care and fewer providers are available to Iowa’s most fragile residents. Many served by the MCOs have felt like they have been through a health care tornado.

This past summer the state announced it would be issuing a request for proposals with the goal of adding MCOs. We issue a word of caution and request the state look long and hard at the companies who want to come provide services to Iowans. We suggest the state look at the track record of these companies in other states, call their colleagues to see what they are like to work with and how they deliver services, and find companies who specialize in serving those with complex needs.

Most have come to realize that the MCOs are not going away, however Iowa can do better. We urge the newly appointed Medicaid Director to move Iowa’s MCO program to the next level and deliver on the original promises and put patients first.

Georgia Bill Aims to Limit Profits of Medicaid Managed-Care Companies
By Andy Miller and Rebecca Grapevine, Georgia Health News via KHN, January 27, 2022

Georgia lawmakers will consider a bill that could force the state’s Medicaid managed-care insurers to repay millions of dollars if their spending on medical care doesn’t reach a certain threshold.

The bipartisan bill, introduced Jan. 26 by the powerful Georgia House Speaker David Ralston, a Republican, is focused on improving the state’s mental health care system.

Tucked inside the legislation is a provision that would require the Medicaid managed-care companies to refund payments to the state if they don’t spend enough on medical care and quality improvements for patients.

Georgia Health News and KHN reported in September that Georgia was one of only a few states that doesn’t mandate a minimum level of medical spending for its Medicaid insurers.

Each year, Georgia pays three insurance companies — CareSource, Peach State Health Plan, and Amerigroup — a total of more than $4 billion to run the federal-state health insurance program for low-income residents and people with disabilities. For 2019 and 2020, the companies’ combined profits averaged $189 million per year, according to insurer filings reported by the National Association of Insurance Commissioners.

Georgia is among more than 40 states that have turned to managed-care companies to run their Medicaid programs — and ostensibly control costs. According to an August report from the U.S. Department of Health and Human Services’ Office of Inspector General, 36 of those states and the District of Columbia set a benchmark “medical loss ratio” for the minimum spending by insurers on medical care. Besides Georgia, the report said, the five states not requiring a managed-care spending threshold were Kansas, Rhode Island, Tennessee, Texas, and Wisconsin.

Most states with a spending requirement set that ratio at a minimum of 85% of premium dollars that insurers are paid. So when a Medicaid insurer spends less than that on medical care and quality improvements, it must return money to the government.

Tennessee - Parents of Young Adults with Severe Intellectual Disabilities File Lawsuit against TennCare
By Caresse Jackman, News 4 Nashville, January 27, 2022

Families with disabled loved ones said the state is making it too hard for them to get assistance, and they want that to change now.

Five plaintiffs are taking part in a lawsuit against TennCare and the Tennessee Department of Finance and Administration, hoping it will make it easier for their loved ones to get the help they need.

“Every time they make changes, it affects my daughter,” Sadiatou Jallow said.

Jallow’s daughter, 26-year-old Binta, needs her help every second of the day.

“My daughter was born with multiple disabilities. She can’t walk, can’t talk, can’t see,” Jallow said.
Binta is enrolled in a special TennCare program administered by the Tennessee Department of Intellectual Disabilities (DIDD), known as the DIDD Wavier. The DIDD Waiver gives extensive care to people with intellectual and development disabilities and allows them to live at home with their families.

However, Jallow claims that for more than a decade, TennCare and DIDD have failed to adequately staff the shifts of coverage that TennCare acknowledges Binta needs.

“There’s no communication, no case manager,” Jallow said.

Jallow is a single parent and has a heart condition, so care for Binta is her biggest priority and concern. It’s why she said she’s joined a lawsuit against the state.

“This is a problem that we see all the time,” Cady Kaiman, Supervising Attorney with the Tennessee Justice Center, said.

The Tennessee Justice Center argues that the state offers such a low pay rate for this program that families have a hard time finding caregivers. They argue that ultimately, this means some families will have to put their loved ones in a facility.

“It’s an incredibly important issue and without these home community-based services, individuals are truly at risk of losing their life,” Kaiman said.

Nebraska - Developmental Disability Services Evaluation Proposed
Nebraska Legislature Unicameral Update, January 27m 2022

Members of the Health and Human Services Committee heard testimony Jan. 26 on a bill that would require an evaluation of Nebraska’s developmental disability services system.

LB1004, sponsored by the committee, would require the state Department of Health and Human Services to engage a nationally recognized consultant to conduct an evaluation of services offered and provided by the state through Medicaid and any additional areas that may be beneficial to an assessment.

The report would be due to the committee by Dec. 31, 2022.

La Vista Sen. John Arch, chairperson of the committee, said Nebraska ranks 32nd in the number of people who identify as disabled, yet 5th in the nation in spending per Medicaid enrollee. He said that disparity, along with continued problems with the state’s disability services wait list, mean it’s time for a thorough examination of how Nebraska provides such services and what improvements can be made moving forward.

“We all know that this is going to be a pretty heavy lift,” Arch said. “Lives are involved.”
Alana Schriver, executive director of the Nebraska Association of Service Providers, testified in support of the proposal. The pandemic exacerbated existing problems with the state’s disability services system, she said, most notably the impact of insufficient provider rates.

Most providers operated at a loss last year, she said, and kept their doors open through relying on savings because reimbursement rates are below the cost of care. Any evaluation of the system must include an examination of provider rates, she said.

“The status quo isn’t working,” Schriver said. “Without providers, there are no services.”

Arizona - Disability Groups Want Better Crisis Care:
'This is a Broken System'
By Stephanie Innes, Arizona Republic, January 25, 2022

Advocates say Arizonans with intellectual and developmental disabilities are getting shortchanged by a crisis response system that lacks the training to meet their needs.

Too often, the mental health needs of people with intellectual and developmental disabilities are ignored in crisis situations, particularly in individuals who are non-verbal and whose behavior may escalate and become violent in frustration, according to a new report authored by Arizona disability advocates.

"Police intervention is not the answer to an unresponsive behavioral health system," says the report, released this month by the Arizona Developmental Disabilities Planning Council, the Autism Society of Greater Phoenix and the Arizona Center for Disability Law along with numerous other advocacy organizations.

"In too many Arizona communities, the 'crisis system' is still being unofficially handed over to law enforcement, sometimes with devastating outcomes."

Advocates say they want to have public conversations about the problems and will be hosting public forums about providing crisis care to individuals with intellectual and developmental disabilities this year.

"This is a broken system,” said Melissa Van Hook, chair of the Arizona Developmental Disabilities Planning Council. "We're in crisis, our people are in trouble. We really need for the system to start listening to people."

Authors of the report developed several legislative recommendations following series of meetings with family members and state officials, as well as a review of policies related to the crisis response system in Arizona. Those recommendations include:

  • Families and people with intellectual and developmental disabilities need more education on navigating the crisis/behavioral health system, which the report calls "a confusing crisis system with unclear rules." 
  • Arizona needs to require stronger accountability from crisis service providers because families of individuals with developmental and intellectual disabilities are reporting an inability to receive behavioral health services after multiple engagements with crisis services.
  • The Arizona Health Care Cost Containment System should broadly disseminate its publicly available phone number for feedback on crisis response. 
  • More training for law enforcement is needed because police officers often find themselves on repeated calls involving the same individuals who remain disconnected from resources. Crisis Intervention Team training is helpful to officers in helping them learn how to de-escalate crisis situations, but rural areas struggle with the ability to participate in such training, the report says.
  • Health plans and state disability support coordinators need additional training on the behavioral health needs of the intellectual and developmental disabilities community. The report says that while up to 50% of children and youths with intellectual and developmental disabilities have a psychiatric diagnosis, their families say they are not always getting the behavioral health support that they need.

Florida - Family of Autistic Man who Died in Lake County Group Home Files Wrongful Death Lawsuit
By Amanda Dukes, WESH TV-2, January 26, 2022

The parents of Caleb Walker clutch photos of their son as their attorneys announce a wrongful death lawsuit against the Lake County group home where he died.

"He was autistic, but he had a life that mattered,” Caleb’s mother, Sarah Walker, said.

The lawsuit alleges Caleb, a 27-year-old with severe autism, died as a result of being held face down on a mat for at least 15 minutes by staff members at the Oconee group home.

"The Oconee group home should be held accountable for killing a young man who was in their care,” attorney Ben Crump said.

Crump claims Caleb died of the same thing as George Floyd, positional asphyxiation.

Crump also accused the group home of being understaffed and says workers were not properly trained in the restraint techniques they used to address Caleb's severe aggressive spells.

What's Happening in Your State?

Whenever you happen upon an article that we may have missed that pertains to people with I/DD, severe autism, intermediate care facilities, sheltered workshops, or other stories that may be of interest to our families, please send it to us!

We can't promise to use everything that is submitted (we often pare down our list stories each week from 15-30 stories down to a half dozen or so), but we will try to add them to the newsletter or our Facebook page as we see appropriate.

If you do come across any articles of interest, please send a short email with a link to the story to us at [email protected]
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.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]
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