November 4, 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


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This week's newsletter serves as a reminder of the importance of supporting VOR. The articles illustrate the ongoing efforts to close congregate care facilities in favor of one-size-fits-all services and "at-home care", the lack of oversight to protect our loved ones from abuse and neglect in smaller facilities, the inequities in the DD system across the nation and within our individual states, the tepid support for our direct support professionals from the federal agencies that run our DD system ($6 million over 5 years?) and the more intensive measures taken by a few states to try to provide for this vital and overlooked work force. Overall, the articles show the dire need to raise our voices to speak up for people with Intellectual and Developmental Disabilities and Autism.

For 40 years,

VOR has provided a voice for

those who cannot speak for themselves.

We need your support to sustain our advocacy.

Please Donate Today!

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Special Offer!

For the months of November and December,

anyone donating $250 or more to VOR

will receive a first-edition copy of


new book


To kick off our end-of-year fundraising campaign, we are offering anyone making a donation of $250 or more a copy of Micki Edelsohn's new book,

Mom with a Megaphone!

Micki has been an unrelenting advocate for people with I/DD for over

50 years.

Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her journey, starting with the birth of her son Robert, through her building of 25 homes for people with intellectual disabilities, and sharing her experiences, hopes, and fears as she navigated the political and financial landscape that defines the I/DD system today.

Please click here to Donate

State News:

North Carolina - Judge Orders N. Carolina to Provide More At-Home Care to Disabled People   

By Nick de la Canal, WFAE 90.7 NPR News, November 2, 2022

A judge has ordered North Carolina to make it easier for people with intellectual and developmental disabilities to receive care at home rather than in institutions.

Disability Rights NC, which represented plaintiffs in the case, called the ruling "historic," while the state Department of Health and Human Services said the order could have negative consequences for the people it's trying to help.

The order was signed by Superior Court Judge Allen Baddour on Wednesday and outlines several actions the state must take — including that the state must start moving thousands of people with intellectual or developmental disabilities out of institutions over the next eight years, and stop admitting them to institutions except for short-term stays within six years.

An appeal is possible, however.

Dave Richard, deputy secretary of NC Medicaid, told reporters Wednesday the state was concerned by “aggressive” timelines in the order, and was especially concerned with the requirement halting long-term admissions to institutions and care facilities.

Richard said there were hundreds of small group homes in North Carolina that serve people with intellectual disabilities. Many of them serve six people or less, Richard said, and preventing them from admitting long-term patients could put them out of business.

Richard also worried the department would have trouble finding enough direct care workers to handle the dramatic increase in need for at-home care, and said the department would also likely struggle to find housing for many disabled people.

"Frankly, the lack of understanding of the complexity of how our system works is concerning," Richard said. "If the order stood, obviously that would be a huge lift for our department, our community providers, in trying to figure out how best to manage that without harming individuals."

Read the full article here

North Carolina - Woman Accused of Abusing Adult with Autism 

By Jessica Parker, WRAL News, November 4, 2022

A woman is behind bars because deputies say she abused an adult with autism multiple times.

The Craven County Sheriff’s Office said 57-year-old Patricia Howard was charged on Wednesday with five felony counts of assault on a disabled adult and two counts of communicating threats.

Deputies said on Oct. 21, they were told of a case of physical abuse involving a “severely autistic adult” at an alternative family living facility operated by Howard in her home.

Read the full article here

Kansas - Parents of Disabled Children Address Legislature Again: ‘Families Are Drowning’

By Rachel Mipro, Kansas Reflector, November 3, 2022

Kansans who urged lawmakers to fix the state’s health care system weeks ago say their situations have become untenable.

Kathy Keck, a mother of five kids, three of whom have developmental and medical disabilities, said she left the workforce more than five years ago to care for her children. In September, Keck told lawmakers that she was struggling to find child care for her children, especially since she had a mastectomy scheduled and wouldn’t be able to do any heavy lifting for a six- to eight-week period.

With her daughter’s full-time nurse covering 52 hours a week, and her husband, a full-time nurse, handling 40 hours of child care per week, Keck was in charge of her daughter for about 76 hours per week, she said in testimony given to the Robert G. Bethell Joint Committee on Home and Community Based Services and KanCare Oversight. 

Keck asked the committee to increase medically necessary nursing care for children on the Technology Assisted Waiver, a Kansan waiver that provides people with services such as personalized medical care. Keck had her mastectomy three weeks ago, and her husband had to take off work under the Family and Medical Leave Act to care for their children.

“As I have asked previously, who is being held accountable for the network inadequacy and workforce crisis? Families are drowning,” Keck said while testifying to the committee again on Wednesday.

Parent Rick Elskamp also testified to the committee in September on behalf of his 21-year-old daughter, Sheridan. Elskamp said Sheridan is mentally a 6-year-old and has sensory issues, a history of seizures, behavioral issues and communication delays. Elskamp and his wife work full time, and payment for her day care is very expensive.

Sheridan got on the Intellectual and Developmental Disabilities waiver program waitlist in 2013 and is still waiting for help, with advisers telling him the wait could be anywhere from 10 to 15 years. The family’s efforts to explore other options, such as putting in a funding crisis request and utilizing a respite care plan offered by their insurance, were unsuccessful.

More than 4,800 Kansans are currently on the waitlist, according to the Kansas Department for Aging and Disability Services. The waiver program provides extra resources, support staff and overnight care options, along with other disability aids.

Elskamp told the committee Wednesday he had no idea of when, if at all, Sheridan will be taken off the waitlist and enrolled in the program, with no progress made since the last time he addressed the committee. Sheridan has 15 people ahead of her on the Shawnee County waitlist and Elskamp said only one person had been taken off the waitlist and enrolled in the program in Shawnee County during the past year.

“All we had to go by was the seven- to eight-year wait time we were given in 2013. Now we are scrambling to figure out how we are going to pay for Sheridan’s day service for possibly the next 10 years,” Elskamp said in submitted testimony.


National News:

Without Congressional Action, Puerto Rico Faces Severe Medicaid Funding Cuts

By Nicole Rapfogel, Center for American Progress, November 3, 2022

Despite being home to more than 3 million American citizens, Puerto Rico has always received a lower rate of federal funding for Medicaid than it would if it were a state. For decades, the federal government has failed to provide Puerto Rico adequate Medicaid funding, leaving the territory unable to cover many low-income residents, deliver comprehensive benefits, and plan for future emergencies, all while exacerbating a mounting physician shortage. In recent years, Congress has authorized temporary increases in Medicaid funding to address funding and systemic deficiencies and, in some cases, respond to disasters and emergencies—but these bumps are often insufficient and inconsistent, making it difficult for the territory to build sustainable health care system capacity. As of 2021, nearly half of Puerto Rico residents received health coverage through Medicaid.

The 2022 Consolidated Appropriations Act and a recent continuing appropriations law increased the proportion of Medicaid expenses in Puerto Rico covered by the federal government, but only until December 16, 2022. Without congressional action, Puerto Rico will revert to receiving even less Medicaid funding, reflecting the long-standing lack of funding parity between Puerto Rico and U.S. states. To improve capacity and infrastructure and ensure health care access for the underserved, Puerto Rico needs long-term funding in line with that received by states. Furthermore, the devastation caused by Hurricane Fiona, declared a public health emergency, makes it even clearer that Congress must take urgent action to secure adequate Medicaid funding for Puerto Rico.

While the federal government’s methodology for its provision of Medicaid dollars is intended to equitably distribute resources to states, its funding guidelines and statutes fail to provide sufficient funding to Puerto Rico, despite the territory’s high rate of poverty. The federal government sets the federal share of Medicaid funding, known as the federal Medicaid assistance percentage (FMAP), for each state, territory, or district based on per capita income. In general, poorer states receive higher levels of federal matching funds. Statutorily, the FMAP ranges from 50 percent to 83 percent. In fiscal year 2021, under the COVID-19 public health emergency, states and territories received an additional, temporary 6.2 percentage-point FMAP bump, raising the FMAP range for the year to 56.20 percent to 83.96 percent.

Puerto Rico’s per capita income in 2021 ($14,468) was just slightly more than half that of Mississippi ($26,941), the state with the lowest per capita income, which received the highest FMAP among states in fiscal year 2021. In fact, in 2021, more than 40 percent of Puerto Rico residents had incomes below the federal poverty level (FPL). If Puerto Rico’s Medicaid funding were calculated as a state, it would receive the maximum FMAP of 83 percent. However, Puerto Rico and other territories statutorily receive a 55 percent FMAP­—just two-thirds of the matching rate it would receive as a state. Because of the temporary FMAP increase of 6.2 percentage points in fiscal year 2021, Puerto Rico received an FMAP rate of 61.2 percent, calculated as its statutory 55 percent plus the temporary FMAP bump.

Read the full article, with graphs, here

Disabled Kids Fighting School Placements ‘Almost Always Lose,’ Va. Suit Says

By Justin Wm. Moyer and John D. Harden, the Washington Post, October 30, 2022

Northern Virginia school systems grant fewer than 1 percent of requests from parents of children with disabilities seeking enrollment in schools that better accommodate their needs, according to data submitted in a civil rights lawsuit.

Plaintiffs allege the state’s education department has “curated” officials who almost always decide cases in its favor, according to the class-action lawsuit filed in federal court last month by parents of an autistic student. The state has prevented disabled children from getting the educational support they need, the parents say, disadvantaging a generation of people with special needs.

The suit, filed in U.S. District Court for the Eastern District of Virginia, told the story of a student referred to only as “D.C.," a 19-year-old who suffers from autism, attention-deficit/hyperactivity disorder, and Tourette’s syndrome, among other disorders. Attorneys in the case shared the data with The Washington Post.

In 2008, according to the suit, Fairfax County Public Schools found D.C. eligible for special education services and placed him in a public school. There, the lawsuit says, D.C. struggled academically and behaviorally, exhibiting “severe aggressive behavior and violence” — sometimes including self-harm and ending with hospitalization.

When his parents, Trevor and Vivian Chaplick, asked that he be placed in a private residential program, their request was denied. Although a social worker warned the Chaplicks that they would lose, the suit said, they appealed anyway — and did lose in 2015.

During a second appeal in 2021, they filed Freedom of Information Act requests to determine how often parents like them won when challenging decisions about their disabled children’s care. What the Chaplicks found troubled them.

“Parents and disabled students in Virginia almost always lose, especially in Northern Virginia,” the suit said.

The Individuals with Disabilities Education Act, which protects disabled students, allows parents to appeal school placements. But between 2010 and July 2021, just three petitions out of 395 in Northern Virginia prevailed.


Feds Tell States Special Ed Service Requirements Must Be Met for Students

By Nathaniel Cline, Virginia Mercury, November 1, 2022

Federal agencies warned officials across the country, including in Virginia, that some states aren’t providing special education services in a complete or timely fashion, according to an Oct. 5 letter from the U.S. Departments of Education and Health and Human Services. 

The agencies also notified state officials that many educational placement decisions for children with disabilities are not in line with federal regulations, and evaluations to determine the eligibility of children suspected of having a disability are being delayed.

Valerie Williams, director of the Office of Special Education Programs at the DOE, and Katie Hamm, acting director for the Office of Head Start at HHS, signed the nine-page letter reminding officials of the importance of supporting children and their families. The letter also included information about resources for implementing early childhood programs for all children.

“As we start this new school year, OSEP and OHS want to emphasize the importance of providing children with disabilities and their families the services and supports that they need to thrive,” the directors wrote.

Charles Pyle, a spokesman with the Virginia Department of Education, said the agency received a copy of the letter but did not comment about whether the department is complying with federal laws and if there is any connection to teacher vacancies.

In July, for the 11th consecutive year, Virginia earned the U.S. Department of Education’s highest rating for improving outcomes for students with disabilities and compliance with the federal Individuals with Disabilities Education Act (IDEA). Under IDEA, students with disabilities must receive educational services tailored to their personal needs.

But in September, a class-action lawsuit alleged the Virginia Department of Education and Fairfax County School Board have been violating the rights of disabled students under IDEA for years.


Another Special Offer!

Give Two VOR Gift Memberships for the Price of One!

From now until Thanksgiving, when you give a friend or family member the gift of a one-year membership in VOR,

you may give another gift membership for free!

This offer applies only to individual gift memberships. You must be a current member to take advantage of this offer, and your gift recipients must either be new members or people whose membership have lapsed for more than one year (before October 15, 2021).

You may give an unlimited number of memberships with this special offer!

(4 the price of 2, 6 for the price of 3, etc.)

    Click Here to Give Two Gift Memberships     For the Price of One!

Direct Support Professionals:

Addressing Wages of The Direct Care Workforce Through Medicaid Policies

National Governors Association, Press Release, November 1, 2022

The direct care workforce represents a critical component of the United States employment market, yet pay remains low. States have taken a variety of actions through provider rate increases and minimum wage policies through the Medicaid program as two strategies to address recruitment and retention.

The National Governors Association Center for Best Practices (NGA Center) has been analyzing direct care workforce challenges and policy trends throughout the pandemic. This paper, the third in aseries, examines Medicaid policy vehicles states can use to increase direct care worker wages. Medicaid is the largest payer for facility-based and HCBS care, paying for 42.1 percent of all long-term services and supports in 2020. Although many health care providers have received rate increases through temporary federal COVID-19 relief and state funding, only a limited number of states have policies to ensure funds are passed on to direct care workers.

Benefits, such as health insurance, paid time off, childcare and transportation also represent important tools that can help to recruit and retain workers. These strategies have a clear monetary value and these non-wage benefits can give employers a competitive advantage over other professions that may offer similar or even slightly higher wages without such benefits. This paper includes some examples of policies states have implemented that address non-wage benefits within or alongside their wage strategies.

Governors have a unique opportunity to influence policies and budgets. Although the Governor must work collaboratively with the legislature to approve budgets and advance legislation, the executive and legislative branches can create policies that improve wages for direct care workers.

This report presents two categories of state strategies that address direct care worker wages:

1. A wage/benefit increase through rate increase or supplement to rate (as a payment outside of their provider rate), including two potential implementation approaches:

  • Providers required to direct a specific percentage or dollar amount of their base payment rate to direct care worker wages (e.g., Connecticut and Kansas).
  • Providers receive an enhanced payment based on criteria, such as achieving high scores on quality metrics (e.g., Rhode Island), or a formulaic calculation (e.g., Iowa), with requirements to pass on some portion of the additional funding to direct care worker wages.

2. A minimum wage, also referred to as a wage floor:

  • Establishing a minimum wage or wage floor for all direct care workers (e.g., Florida) or a specific category of direct care workers (e.g., Louisiana).
  • A minimum wage for direct care workers that is a specific percentage or dollar amount above the state minimum wage (e.g., New Jersey).

Importantly, states may implement multiple strategies to address direct care worker wages, which may intersect in important ways. For example, Colorado and Louisiana have implemented both of the above strategies, using a provider rate increase to account for their direct care minimum wage requirements.

Read the full article here

ACL Grant to Establish National Center to Strengthen Direct Care Workforce

RCPA, October 31, 2022

The Administration for Community Living (ACL) has awarded a five-year grant totaling over $6 million to establish a national center to expand and strengthen the direct care workforce across the country. This initiative will provide technical assistance to states and service providers and facilitate collaboration with stakeholders to improve recruitment, retention, training, and professional development of the direct care workers who provide the critical services that enable people with disabilities and older adults to live in their own homes and communities.



Autism Alters Brain in Major Ways, Study Finds

By Dennis Thompson, LKLY News, November 3, 2022

Autism is a more comprehensive disorder than previously thought, and appears to arise from brain changes located throughout the cerebral cortex, not just in specific areas, a new study reports.

Because of autism’s specific symptoms, scientists had thought the disorder was likely caused by changes in brain regions believed to affect social behavior and language.

But the new study — led by researchers at the University of California, Los Angeles — found genetically driven brain-wide changes in virtually all of the 11 regions of the cerebral cortex that were analyzed. The cerebral cortex is the outermost layer of the brain, and plays a key role in all human cognition and behavior. (Cognition refers to the processes needed to learn something new, remember and use knowledge.)

The study “provides a key starting point for understanding the disorder’s mechanisms, which will inform and accelerate development of disease-altering therapies,” study co-author Dr. Daniel Geschwind said in a university news release. He’s a professor of human genetics, neurology and psychiatry.

The researchers examined the genetics in 11 cortical regions by sequencing RNA from brain tissue samples gathered from 112 people after death. They then compared what they found to the genetics of healthy brain tissue.

People with autism had brain changes in both high-level processing regions — those involved with reasoning, language, social behavior and mental flexibility — as well as the regions that process sensory information.

The largest changes occurred in the visual cortex and the parietal cortex, which process sensory information such as touch, pain and temperature. This could explain why people with autism often are hypersensitive to outside stimulation, researchers said.

Researchers also uncovered strong evidence that the genetic risk for autism rises from a specific neuronal gene that has lower expression across the brain. If true, this means that the RNA changes in the brain observed in this study are likely the cause of autism rather than a side effect of the disorder.


The new study was published Nov. 2 in the journal Nature, (available here)

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.

H.R.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

Help Us Help:
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What's Happening In Your Community?

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Is there legislation in your state house that needs attention?

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