March 3, 2023

VOR's 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


March is

National Developmental Disabilities Awareness Month

While we appreciate the effort of many disability advocacy groups celebrate March as the month in which to increase awareness of the need for inclusion of the disability community into the mainstream of society, we at VOR - A Voice Of Reason - would also like to advance awareness of those with the most severe intellectual and developmental disabilities and autism, and ask that others the ID/A community include our loved ones and their caregivers in their quest for recognition and in all requests for increasing appropriations for people with disabilities.

We ask for awareness that one size does not fit all, that individuals and families and guardians deserve choice in determining which residential settings and employment programs are most appropriate to enable each individual to lead her or his best life.


This month, we are kicking off our advocacy campaigns with the 118th Congress, working in tandem with like-minded groups to rebuild a system that supports all people with I/DD and autism.

We hope you will join us in our work, and we hope that our members and supporters will take part in our 2023 Legislative Initiative, to be held on Zoom on Sunday, May 7th, and followed by member-engaged meetings with congressional aides and committee staff.

Stay tuned for more details!

In related news, United Cerebral Palsy (UCP) and the American Network of Community Options and Resources (ANCOR) have kicked off National Disability Awareness Month with their 13th edition of "The Case for Inclusion".

Read more at Disability Scoop

Download "The Case for Inclusion" here

National News:

CMS Waivers, Flexibilities, and the Transition Forward from the COVID-19 Public Health Emergency

Centers for Medicare & Medicaid Services, February 27, 2023

This week, CMS published information regarding the expiration of the Public Health Emergency for Covid-19 (PHE), which is expected on May 11, 2023.

Click here for more information

You may download the report here

As always, we urge our members to speak with their providers and with state authorities if you have any questions or concerns about losing services for your loved ones with I/DD and autism.

State News:

California - Nursing Shortage Puts Medically Fragile Children at Risk, Spurs Calls for Change

By Claudia Boyd-Barrett, California Health Report, February 21, 2023

Analicia Brokloff just wanted to take her daughter home. Her 2-year-old, Mila, was ready to be discharged from UC Davis Children’s Hospital in Sacramento after having a lung infection. 

Mila, who has cerebral palsy, still required the care of a home nurse, as she recovered last fall from having a tracheotomy – a surgical opening in the throat to help her breath. 

But there were no home nurses available. So, due to staffing shortages and cracks in the health care system — but not due to medical need — Mila had to stay in the hospital. It had been two weeks since she was well enough to go home. She’d arrived in the hospital close to two months ago, and her family and the hospital discharge planner had been searching for a home nurse the whole time. 

“It was just really hard,” said Brokloff. “It feels like (children with disabilities) and their parents are falling through the cracks.”

Finding nurses to care for medically fragile children at home has historically been difficult. But since the start of the COVID-19 pandemic, the problem has worsened dramatically, according to parents of children with disabilities and home health agencies. The pandemic set off a surge in demand for nurses at hospitals, clinics and other health care facilities, and widened the compensation gap between these and lower-paid home nursing jobs. This pulled nurses away from home care. At the same time, large numbers of nurses left the profession – many due to health concerns, retirement and burnout – shrinking the overall workforce. As a result, fulfilling requests for home nurses has become close to impossible, those in the field said. That’s especially true for the more than 1 in 4 California children with special health care needs who, like Mila, are insured through the state’s public health insurance program, Medi-Cal, which typically pays nurses less than private insurance.

“It’s worse than ever, it really is,” said Dean Chalios, president and chief executive officer of the California Association for Health Services at Home.


To solve the issue, the association is calling on California’s governor and legislature to increase Medi-Cal reimbursement rates for home nurses by 40 percent in next fiscal year’s budget. Chalios said a rate increase would make pay for home nursing more competitive and attract people back to the field. It would also save the government money, he said, by keeping medically fragile children out of hospitals and nursing facilities. Both are more expensive than caring for children at home. 

“Even with the economic downturn, now’s really the time to do it because it’s going to save Medi-Cal money in the long run,” he said. “This needs to be done … these children need this help, these families need this help.” 

Parents of children with special health care needs interviewed by the California Health Report agreed that pay rates for home nurses need to go up – some had themselves lost nurses to higher paying positions or jobs with better benefits. A few parents offered other suggestions too, such as providing more stable hours and benefits for home nurses employed through nursing agencies, offering more home nurse training at nursing schools, and making it easier for parents to obtain nursing qualifications themselves.


Georgia - 'We're in a State of Emergency': Georgia Developmental Disabilities Director says Workforce is the Most Urgent Need

Bu Diane Wagner, Rome News-Tribune, via Newsbreak, February 25, 2023

 As a state House budget subcommittee considers how many more Georgians with developmental disabilities should be added to programs providing in-home help, funding alone may not address the backlog.

“We have to be careful not to be purveyors of false hope,” said Rep. Katie Dempsey, R-Rome, who chairs the Human Resources appropriations subcommittee. “It’s not a solution if we gave them something and they were not able to find those services.”

The General Assembly is wrapping up work on the “little budget,” which recalibrates funding for the fiscal year ending June 30. This is about the “big budget,” which will run from July 1 through June 30, 2024.

An earlier hearing drew an emotional overflow crowd to testify to their need for more slots in the Comprehensive Support Waiver and New Option Waiver programs. They’re extensions of the state Medicare program for people who can’t get the assistance elsewhere.

“Even if you approved 2,400 COMP waivers, we don’t have the workforce to support it right now,” Commissioner Kevin Tanner of the Department of Behavioral Health and Developmental Disabilities told the subcommittee last week.

He was called back Tuesday to give the subcommittee hard data on what his agency is doing, and hopes to do in the future. There’s a planning list of prequalified individuals awaiting waivers but Tanner said they can’t absorb more than about 500 a year.

“Some providers are just not accepting more because they don’t have the staffing,” he said. “We’re in a state of emergency on workforce. It’s the biggest issue we’re facing as an agency.”

The median pay to care providers is at $11.50 an hour. A professional rate study is recommending an increase to about $15 with benefits and paid leave — a 40% hike overall, Tanner said. It would be up to the providers what they pay their staff, but the raise would be a big step toward relief.

“It would cost just over $266 million,” he said. “Approximately two-thirds federal (money) and $90,642,058 for the state to implement the preliminary rate study.”

More than 500 public comments were submitted during the study, which DBHDD expects to finalize this spring, Tanner said. Then it has to get legislative approval before the Georgia Department of Community Health signs off and sends it to the federal Centers for Medicare & Medicaid Services. CMS approval is not likely to come until sometime next year, he said.

Dempsey said she understands that a lot of people on the planning list are “in uncharted territory” in terms of assistance. However, she noted that many have found help through other state programs but opt to remain on the list in case of hospital closures or other unexpected events. The subcommittee’s proposed budget for the upcoming fiscal year, she said, must reflect reality.

“We will wrestle with what we can do in the House (in terms of waivers) but not get too far out that we lose track of the real issue, which is workforce,” Dempsey said. 

Read the full article here

New Hampshire - With Staffing Shortages at Area Agencies, Assistance for People with Disabilities On Hold

By Michaela Towfighi, Concord Monitor, February 25, 2023

When Carol Chumak thinks of her son sons’ graduation, like any proud parent, she remembers what a momentous day it was for both of them.

She had two reasons to celebrate that day. At the Concord High School graduation last spring, both of her sons Nicholas, 20, and Samuel, 22, received their diplomas side by side in the class of 2021.

Like any graduation, the question always comes of what’s next. For Nick, that meant getting his drivers license and starting a job at Market Basket. For Sam, who has autism, it meant learning to navigate the world of adult programming for those with special needs.

But an unexpected lesson came in the form of what to do in the face of repeated disappointment, when staffing shortages at Community Bridges – an organization that provides support for individuals with disabilities in the community – meant his services would put be on hold.

Now almost two years out of school, the hopes of getting a job, gaining some independence and learning to navigate adult life with autism are at a standstill for Sam, who has yet to be assigned any form of assistance from the service.

While many 21st birthdays are celebrated with a night on the town and final passage into adulthood, Sam Chumak’s birthday held a different meaning. When he turned 21 last March, he aged out of child support services for people with disabilities.

Aging out meant stacks of paperwork to transition to adult programming, which Carol was ready to tackle. At 21 years old, support would come in the form of Medicaid providing funding for services for her now-adult son.

“We had been planning for him to age,” Carol said. “I crossed all my T’s and dotted all my I’s, got everything started, got his Social Security set up, got his Medicaid set up, so that there was nothing lingering when he did.”

Preparing Sam for his adult life also meant connecting with Community Bridges. Before he aged out of programs for younger children, Carol spoke with an intake counselor about potential support services for her son.

As a high-functioning adult with autism, Sam lives at home.

At Concord High, Sam had the chance to talk with friends, teachers and his support aides. Life at home is more isolating. “He’s just a big, big teddy bear that just wants to be social,” his mom said.

Through Community Bridges, he was promised 20 hours a week of outside community assistance. This means that someone would be able to accompany him to the gym, grocery story or do an activity in the community. He could also receive coaching for job interviews and have someone help him find something part time.

“Just to do the things that he likes to do and show him that these things are possible to do without your mom holding your hand,” said Carol.

But with severe staffing shortages at Community Bridges, and agencies statewide, Sam’s post-school life feels frozen in time as he continues to wait for assistance.

“None of those things happened. He’s had no programming,” she said. “I don’t want him to put his life on hold any more than we already have.” 

Read the full article here

Minnesota - Opinion: Disabled Services Face Dire Danger

By Tom Gillespie, Star-Tribune, February 25, 2023

Think back to when you were in school. Do you remember seeing kids with disabilities around you with their peers, learning, having fun and being a recognized part of the school community? Do you know what happened to them after you graduated from high school?

Many of them were not able to follow a traditional path of going to college or getting a full-time job. Instead, children served through special education programs grow to be adults who rely on Minnesota's home and community-based services to seek a place to flourish and live a meaningful life.

I am the proud president and chief executive of Living Well Disabilities Services, and for more than 50 years we have supported thousands of Minnesotans impacted by disabilities every hour of every day. We are your neighbors, though you might not know it. Our incredible full-time and part-time staff of 500 serves 300 people in 37 homes throughout the greater Twin Cities metro area. We partner with families to give people with disabilities safe, joy-filled homes to live in, help them with their daily needs and medical care, get them to work or other activities each day, and help them live fulfilling lives. What would the adults with disabilities in Minnesota do if our supports didn't exist?

Our industry has been operating in crisis mode for several years. Hundreds of people throughout the state have been forced to leave their home due to the closure of dozens of group homes. On top of these closures, many providers are not able to fill shifts because they cannot find staff to provide support. As a result, people with disabilities are not only displaced, but they are also left with fewer choices, less creativity and less hope of living the life of their choosing.

At Living Well, we are nearly 100 employees short. The average hourly pay for our direct support professionals (DSPs) who care for the people in our homes is $16, yet their job duties are that of a health care professional, therapist, chef, career coach and companion. DSPs are responsible for everything from administering medication and maintaining feeding tubes to cooking specialized meals, providing coaching and life skills training, and much more. These low wages are the result of a fixed reimbursement for DSP services that is controlled by the state Legislature. Following last year's inaction at the State Capitol, this year is a do-or-die situation: Those fixed reimbursement rates have drastically fallen behind the inflated cost of living that we all are trying to manage.

Our tragic reality is that DSPs who love what they do often leave their chosen profession because they can no longer afford to do it. It is nearly impossible to stay true to our mission of transforming the lives of people with disabilities when we are overburdened and overlooked.

Thankfully, there is legislation being proposed at the Capitol this year that would help increase the pay for DSPs. They deserve it. People with disabilities in our communities deserve it. We have an incredible opportunity to help people that have been ignored for far too long. Our state is uniquely positioned to reinvigorate an industry that has been weakening for years. Without urgent support, the services we provide are going to look very different or continue to disappear, with devastating effects for the thousands of our neighbors and community members with disabilities and their families.


New York - State Enters Agreement with SUNY to Expand Direct Support Professionals to get National Certification, College Credits

Staff Report, Fnger Lakes 1, February 27, 2023

Governor Kathy Hochul announced on Friday that the New York State Office for People With Developmental Disabilities has entered into a $5 million agreement with the State University of New York to expand a program that will enable direct support professionals to secure national certification and college credit toward a certificate, associate or bachelor’s degree.

The program, known as a microcredential, is aimed at helping individuals already working in the profession and those new to the developmental disabilities field to earn college credits that meet requirements for certification from the National Alliance for Direct Support Professionals (NADSP). Successful completion of the program will result in a SUNY microcredential, a national certification, and college credit toward a certificate, associate, or bachelor’s degree.

[T]he microcredential program is aimed at helping individuals already working in the profession and those new to the developmental disabilities field. The program will provide a $750 stipend to eligible students who successfully complete a microcredential and earn a certification. Grant funding will cover tuition, books, course materials, NADSP credentialing for students, and educational supports.

The partnership is aimed at encouraging students to pursue professions that provide direct support for people with developmental disabilities and to further professionalize the developmental disabilities workforce. The microcredential program will prepare participants to deliver high-quality supports to people with developmental disabilities, provide opportunities to the existing workforce, and create a pipeline of qualified candidates who are trained and certified in the field.

“New Yorkers with developmental disabilities deserve to have the right people with the right training supporting them so they can thrive in their day-to-day lives,” Governor Hochul said. “This partnership will further strengthen and professionalize New York’s direct support workforce and is yet another example of the actions we are taking to offer career advancement and growth opportunities in this crucial field.”

SUNY Chancellor John B. King, Jr. said, “SUNY is proud to partner with OPWDD and National Alliance for Direct Support Professionals to support New York State Direct Support Professionals. Through our suite of microcredentials, adult learners have access to high-quality education and training, coupled with access to tutoring and other resources to succeed. We recognize the invaluable work our direct support providers do every day, and we are pleased to create new pathways to enter the field, advance careers, and help realize academic goals.”

Read the full article here

Help Us Help:

Planned Giving

As we approach the mid-April tax season, we ask that our members consider making a donation to VOR as a way to ease your tax burden while supporting our mission to advocate for individuals with I/DD and autism.

As always, we suggest you consult with your policy administrators and tax professionals to determine how best to contribute.

Another Way to Say Thank You

Have you thought about maybe making a recurring donation to VOR?

Many folks have found that recurring donations are an easier, more budget-friendly way to contribute.

May we suggest $19 per month?

We don't know why, but that seems to be the popular amount that many charitable organizations suggest. No matter; we are grateful for any gifts we may receive, be they recurring, annual, spur-of-the-moment, or in gratitude for past benefits or paying it forward for the future.

Click here to contribute to VOR

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 receive our newsletter.

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]


H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) To amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.


S.100 - Better Care Better Jobs Act

Sen. Bob Casey (D-PA) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

VOR supports increasing funding for people with I/DD, but we have concerns that this bill, in its current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.


At this time, there are no bills which we outrightly oppose. Stay tuned.

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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?

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