December 30, 2022

Time is Running Out!

VOR's 2022 Fundraising Campaign

We are in the final hours of our 2022 fundraising campaign.



We humbly ask those who have not yet contributed to take a moment to give now.

VOR's January Networking Meeting

Tuesday, January 24

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

We invite you to join us on Zoom to meet with like-minded advocates and families of individuals with I/DD and autism.

Our topic this month will be a look at the

118th Congress

and the issues that we may be bringing to their attention in coming session.

The forum will be moderated by Roslyn Leehey. and feature a presentation from Gayle Gerdes of Health Policy Solutions and

VOR's President Joanne St. Amand & Executive Director Hugo Dwyer

To register, please write to

[email protected]

with the subject line "Networking Meeting"

Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her 50 years of advocacy and philanthropy, 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.

To their critics, Polk and White Haven Centers are relics of an era when the disabled were shunted away to large impersonal institutions, doomed to lives excluded and segregated from the community. To the advocacy groups who work tirelessly to close institutions, deinstitutionalization represents both best practices in the field of developmental disabilities and a moral imperative. To their supporters, Polk and White Haven are critical backstops in the disability-services system, a placement of last resort for the most medically and behaviorally challenged individuals.

At their inception in the mid-nineteenth century, training institutions for the developmentally disabled such as Polk were an advancement in the treatment of people with disabilities, who often had been relegated to poorhouses and jails. The first “state school” was opened in Massachusetts in 1850 under the direction of Samuel Gridley Howe, a physician and an abolitionist whose institution for the disabled sought to educate “feeble-minded” children.

By 1875, eight state schools for people with intellectual and developmental disabilities operated in the United States. Most were set in rural areas with adjoining farms, providing food and work for residents. Administrators hoped those residents would ultimately return to their communities with the skills required for gainful employment. A retrospective in a 1940 edition of the American Journal of Mental Deficiency noted that the earliest state schools sought to give people with disabilities “a special form of training, and after a few years return [them to their] home or community.”

This was the founding vision at Polk Center, which opened as Polk State School and Hospital in 1897 on more than 2,000 acres in northwestern Pennsylvania. According to superintendent J. M. Murdoch’s 1924 biennial report, some individuals with disabilities admitted to Polk were later “returned to the family or found suitable homes” in the community after attending school and work programs on grounds. “Many of these former pupils,” he noted, “keep in touch with us by letters and visits; expressing appreciation and gratitude for the training and treatment received.”

The schools soon became stretched beyond capacity. Conditions at Polk and other state institutions deteriorated in the 1940s and 1950s as surging admissions strained facilities’ already-thin staff and resources. By 1958, nearly 3,000 people lived at Polk, and more than 115,000 people with disabilities lived in state schools across the country. At its peak, Pennsylvania operated 23 institutions for people with intellectual and developmental disabilities, many teeming with severely disabled children.

More people with mild and moderate disabilities were kept at home after World War II, which led to Polk admitting a disproportionate share of people with severe disabilities. The school’s superintendent predicted that such trends would “inevitably result in a more custodial type of program with emphasis on medical and nursing care and with much less prospect of producing definite gain through education and training.” Polk, and the other increasingly custodial state schools around the country, soon became bywords for abuse and neglect. Rows of crippled children laid unattended in cribs, their development permanently stunted. Disabled adults roamed through huddled day wards, wailing and moaning and covered in bruises.

Staff were tasked with caring for thousands of disabled children and adults on a shoestring budget with unthinkably high staff-to-patient ratios. One report from the notorious Pennhurst State School in Spring City, the subject of the 1968 exposé Suffer the Little Children, had two staff members tending to nearly 80 crippled children with intellectual disabilities on one of the school’s day wards.

Read the full article here

Jeffrey, now 41, lives in a group home in Maryland, and says the love and support of his family got him to this point. “After I was injured my parents were with me every day,” he writes in an email. “They told me despite disabilities, I can succeed. I have succeeded thus far.”

It’s one thing to report on the kitchen-table issues that affect people, another to live them. As a mother, Woodruff is keenly attuned to the needs of those with disabilities and their caregivers; as a Washington reporter, she has a deep understanding of what politicians and policymakers can do to help them.

“It made her dedicated to advancing the needs of people with these challenges in the medical system,” says longtime friend and colleague Andrea Mitchell, NBC News’s chief foreign affairs correspondent. “I think she’s more sensitive. She’s always been empathic, but this inevitably changed her.”

“I thought I was sensitive and compassionate before Jeff was injured,” Woodruff says. “But I found that there’s just a whole other level of what he was experiencing that affected me profoundly.” As a parent and caregiver, “you suddenly belong to this community that you never knew you were going to be part of, and none of us probably wanted to be there.”

Continued

Parents Often Bring Children to Psychiatric E.R.s to Subdue Them, Study Finds

By Ellen Barry, The New York Times, December 27, 2022

For emergency room doctors, they are a dispiriting and familiar sight: Children who return again and again in the grip of mental health crises, brought in by caregivers who are frightened or overwhelmed.

Much has been written about the surge in pediatric mental health emergency visits in recent years, as rates of depression and suicidal behavior among teens surged. Patients often spend days or weeks in exam rooms waiting for a rare psychiatric bed to open up, sharply reducing hospital capacity.

But a large study published on Tuesday found a surprising trend among adolescents who repeatedly visited the hospital. The patients most likely to reappear in emergency rooms were not patients who harmed themselves, but rather those whose agitation and aggressive behavior proved too much for their caregivers to manage.

In many cases, repeat visitors had previously received sedatives or other drugs to restrain them when their behavior became disruptive.

“Families come in with their children who have severe behavioral problems, and the families really just are at their wit’s end, you know,” said Dr. Anna M. Cushing, a pediatric emergency room physician at Children’s Hospital Los Angeles and one of the authors of the study. “Their child’s behavior may be a danger to themselves, but also to the parents, to the other children in the home.”

The findings, published in the journal JAMA Pediatrics, analyzed more than 308,000 mental health visits at 38 hospitals between 2015 and 2020.

Compared with patients presenting with suicidal or self-harming behavior, those with psychotic disorders were 42 percent more likely to revisit the emergency department within six months, the study found; patients with impulse control disorders were 36 percent more likely; and patients with disorders like autism and A.D.H.D. were 22 percent more likely. Patients who required medications to subdue them were 22 percent more likely to revisit than patients who did not.

The results suggest that researchers should focus more attention on families whose children have cognitive and behavioral problems, and who may turn to emergency rooms for respite, Dr. Cushing said.

“I’m not sure we’ve been spending as much time talking about these agitated and behaviorally disregulated patients, at least on a national scale,” she said.

Continued

West Virginia Journalist Fired in Alleged Retaliation Over Reporting on Abuse in State Facilities   

By Julia Conley, Common Dreams, December 29, 2022

A journalist at West Virginia Public Broadcasting, the state's public television and radio news network, was fired from her position after reporting on abuses taking place at state-run psychiatric facilities—reporting that allegedly sparked threats from state health officials and pressure on the network to change its coverage of the state government.

Amelia Knisely published a report on November 3 about abuses suffered by people with disabilities at William R. Sharpe, Jr. Hospital and other facilities run by the state Department of Health and Human Resources (DHHR), and a call by state Senate President Craig Blair, a Republican, for GOP Gov. Jim Justice's administration to investigate the hospital.

Allegations detailed in the reporting included that facility staff attempted to cover up their responsibility when a woman at the hospital died after being fed "an improper diet," that residents at a group home for people with intellectual and developmental disabilities (IDD) were left without working plumbing for months, and that a man with IDD died "after three staff responsible for his care refused to provide CPR."

On December 6, Knisely told the Parkersburg News and Sentinel Wednesday, the station's news director informed her that she "could no longer write about DHHR" and that the order came "from WVPB executive director Butch Antolini," who days after her report had received a letter from DHHR Secretary Bill Crouch.

Crouch had demanded a retraction of the story, and as Knisely told the News and Sentinel, a DHHR spokesperson "contacted WVPB leadership and threatened to discredit WVPB if I continued reporting on the health department."

"It is crucial for the press to hold government agencies accountable," Knisely told the newspaper. "It must be emphasized that these events followed my reporting on the mistreatment of people with disabilities, who are in state care."

Continued

Massachusetts - SDM Bill Close to Passage in Legislature, Yet Still Lacks Safeguards to Protect Individual and Family Rights

By David Kassel, the COFAR Blog, December 29, 2022

Legislation to establish Supported Decision Making (SDM) for persons with intellectual and developmental disabilities (I/DD) in Massachusetts has gotten close to final passage in the state Legislature.

But, as we’ve said about similar bills in the past, the current bill (S. 3132) lacks safeguards to protect the rights of individuals in the Department of Developmental Services (DDS) system and the rights of their family members and guardians.

The bill, which would replace guardianship of individuals with informal teams of “supporters,” passed the Senate in November, and is now in the House Ways and Means Committee. We have urged key legislators not to pass this bill during the remaining “informal” House session in which the bill would not even require debate or a recorded vote by individual members.

Under the legislation, the SDM supporters would help individuals with intellectual and developmental disabilities (I/DD) make key life decisions, including decisions about their care and finances. Most people with I/DD are currently under guardianship. But SDM proponents maintain that guardianship unduly restricts their right to make those decisions.

In our view, however, the bill continues to lack safeguards to protect individuals with I/DD from potential financial exploitation, and to prevent the marginalization of their family members in SDM arrangements. A key piece missing from the bill is a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.

Continued

Indiana - Opinion - Pay Now or Pay More Later: Ensuring Families Have Medicaid Coverage for ABA Therapy  

By Jenna Burkhard, The Hamilton County Reporter, December 30, 2022

In a few weeks, our state legislators will convene for the 2023 legislative session.

One issue that will likely be top-of-mind is Indiana’s high healthcare costs, which are creating a heavy burden on Hoosiers in Hamilton County who are already feeling the pain in their pocketbooks from high inflation.

The emphasis on high healthcare costs has spurred a flurry of proposals for lowering costs – including cutting the state’s spending on essential programs like Medicare and Medicaid. Policymakers must consider these proposals carefully and focus on adopting precise cost-cutting strategies instead of across-the-board cuts which could have unintended consequences and raise our healthcare costs in the long run.

A prime example of shortsighted cuts would be lowering coverage for preventative care. Cutting back on these types of care would ultimately lead to worse health outcomes and a much higher price tag down the road.

As an ABA therapist, I work daily to support and advocate for individuals with intellectual disabilities and their families – including individuals with Autism Spectrum Disorder (ASD). One of the most scientifically validated therapies for individuals with autism is called Applied Behavior Analysis (ABA) therapy. ABA therapy is a prime example of a routine intervention that can far improve outcomes in the long run.

Importantly, ABA therapy is far more effective as an early intervention. Participating in ABA therapy at an early age has lifelong impacts on people with ASD and their families – allowing them to be more independent, make their own income, and have a more robust social life. Simply put, early investment in ABA therapy pays off in the long run.

That’s why it is surprising that ABA may be singled out as a place to cut Medicaid coverage.

One of the main goals of ABA therapy is to limit the duration of service and prepare clients to leave the therapy setting and be able to translate their learned skills to the real world. That means most individuals with ASD receive this therapy for one or two years – and receive a lifetime of benefits, both for themselves and for their families who can now more reliably enter the workforce instead of 24/7 childcare at home.

Compare that to an entire adulthood of lost opportunities for individuals and their families if access to this care is stripped away. According to one study, services for adults with autism have a much higher cost than services for children, by a factor of three, costing as much as $196 billion a year, compared to $61 billion for children services.

Indiana has a reputation for providing superior autism services for those who need it while remaining fiscally responsible. That’s why state legislators and other decision-makers in Indiana should reject any Medicaid cuts for preventative autism care.

Continued

Virginia - Youngkin Vows to Shrink Wait List for Developmental Disability Services

By Jackie DeFusco, WRIC News, December 29, 2022

Thousands of Virginians with developmental disabilities are in need of state support but stuck on a waiting list. Governor Glenn Youngkin wants to eliminate the highest priority backlog by the end of his term and make a big dent this budget cycle. At least one Senate Democrat thinks Youngkin’s goals are realistic.

According to the Virginia Department of Behavioral Health and Developmental Services, there are 14,433 individuals on the waiting list for a Medicaid Development Disability Waiver. Of those, 3,199 are “priority one,” which means they are expected to need services in a year or less.

As part of a broader plan to transform Virginia’s behavioral health system, Youngkin is proposing funding for another 500 DD waiver slots. That’s on top of 600 additional slots that the General Assembly already approved in the budget for fiscal year 2024.

“With the increased funding in this proposal, we will clear one third of the backlog. In my next budget, I will propose additional funding with the goal, and I hit my goals, of totally eliminating the priority one waiting list by the end of my term,” Youngkin said at an event earlier this month. “We must make this system work better.”

Lisa Smith’s 22-year-old daughter, Haley, finally qualified for a waiver earlier this year. Smith said they signed up 14 years ago and spent at least three to four years on the priority one wait list.

“It does take a toll,” Smith said. “It takes a toll financially. It takes a toll emotionally,”

Haley has Dravet Syndrome, which causes uncontrollable seizures that can occur multiple times per day. Smith said caring for her is a full-time job, but before the DD waiver they were only being compensated for four hours of supervision daily.

“It was ridiculous,” Smith said. “You can’t tell her, ‘okay, can you schedule your seizures in this four hour window.'”

Now, the state is paying for 16 hours of in-home care each day, relieving stress and uncertainty about the future, according to Smith.

But Smith still thinks lawmakers should go further. She said the position funded by Haley’s waiver pays $12.70 per hour without benefits.

“It is very hard to find someone who is willing to work at that wage and have the skills you need,” Smith said.

State Senator George Barker, a Democrat who has been focused on this issue for years, said Youngkin’s goals to add another 500 slots during the 2023 session are realistic.

“We’ll do that and we may be able to do more,” Barker said. “It depends on the provider’s capacity. So we’re going to work on that to make sure we don’t give people false hope.”

Barker said a shortage of providers has prevented lawmakers from funding more slots in the past. For instance, the budget that came out of the Senate earlier this year included funding for 1,200 additional slots, but it was cut down to 600 in a compromise.

Instead of adding more slots, Barker said lawmakers focused on increasing compensation to grow the pool of providers. He said it’s starting to pay off. 

Read the full article here

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[Please click on blue link to view information about the bill]

VOR SUPPORTS:

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. 1544- Accelerating 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.



VOR OPPOSES:

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.

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