If you would like to know what issues VOR has been presenting to Members of Congress, and maybe print up a few copies to share with your elected officials, please click here.

August!

Please consider making a quick show of support for our team here

Joint Press Release from Sens. Kelly, Sinema, Reps. Gallego, O'Halleran, and Rice, Juiy 21, 2022

Today, Arizona Senators Mark Kelly and Kyrsten Sinema introduced the Preventing Abuse and Neglect of Vulnerable Americans Act, legislation aimed at improving the quality of care for residents living at Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs). Representatives Ruben Gallego (D-AZ), Tom O’Halleran (D-AZ), and Tom Rice (R-SC) introduced companion legislation in the House.

We sincerely hope that these elected officials will consider expanding their bill to protect all people with I/DD, and the aging population, from abuse and neglect.

By Brendan J. Lyons, Times-Union, July 31, 2022

A staffing crisis at residential facilities operated by the state Office for People with Developmental Disabilities is continuing to drive closures of the facilities, with labor groups and families who rely on the group homes worried there is not enough being done to recruit new workers.Rural areas of the state, especially in the Finger Lakes region, are among the regions being hard-hit by the "suspensions" of residential services that have resulted in many developmentally disabled people being forced to move into new group homes or care facilities, sometimes long distances away from their families.

"They're not doing a good enough job trying to recruit new people in a very rural area," said Karen Duboy, a Wyoming County resident whose 30-year-old son Matthew, who has Down Syndrome, was uprooted in December from the group home where he had lived comfortably for years. "I just think the state has really let a lot of people down with continuing the services that we've all looked for."

Duboy's son was among a group of dozens of disabled persons who were initially going to be moved to a day center in the Finger Lakes region last November where cots were being set up in a gymnasium. That plan was quickly abandoned that month after the Times Union contacted Gov. Kathy Hochul's office about it.

Duboy said that after the state closed her son's longtime residence, where he had lived with four other residents, he was among 11 residents who were moved into another home with 11 other residents, many of whom used wheelchairs.

"The whole dynamics changed for both houses. So now you have 22 people that have been really disrupted," she said.

According to the Public Employees Federation, OPWDD's civil service workforce declined by more than 10,000 workers — to just under 20,000 — between 1990 and last year.

In response to a series of questions, OPWDD issued a statement saying that "like most human services organizations across the country" it is facing "a workforce shortage of crisis proportions worsened by the COVID pandemic."

The agency said it has needed to implement "emergency measures to ensure the safety of people living in a small number of group homes that are unable to retain or recruit sufficient staffing levels."

In the past three years, 130 OPWDD-operated group homes across the state were "temporarily suspended" due to staff vacancies, the agency said.

Statewide, OPWDD said it has nearly 3,000 full-time staff vacancies from its 2023 budgeted allocation. The agency said that in "rare circumstances" it has needed to mandate overtime that results in staffers working more than 30 consecutive hours to maintain minimum staffing requirements for those they serve.

Three years ago, there were more than 7,600 people being cared for in group homes and other 24-hour care facilities run by OPWDD. But staffing shortages that began before the pandemic have decimated that workforce, which state officials have acknowledged are underpaid for often challenging working conditions.

But waiting lists continue to remain stacked with thousands of individuals whose families or caregivers are seeking residential care.

As of the end of March, OPWDD was seeking emergency residential placement for 1,059 people who were either "homeless or in imminent danger of being homeless." There were 2,270 people seeking residential placement in a "substantial need category, which includes people at an increasing risk of having no permanent place to live, such as someone whose family or other caregivers are becoming increasingly unable to continue to provide care for the person."

An additional 2,159 people were seeking residential placement but were not considered to be in "emergency" or "substantial need" situations.

Group home workers interviewed for this story said the mandatory overtime has contributed to additional departures — retirements and resignations — and it's not unusual for some employees to be required to work shifts of more than 30 hours.

Thirty years ago, Matt and Eunice Morelli’s lives changed forever when their son Marco was severely injured in a car accident. The healthy, athletic 28-year-old spent a year in a coma and suffered a traumatic brain injury. Matt and Eunice spent years caring for their son in their own home. A decade ago, they decided it was time to plan for Marco’s future.

“We wanted to make sure he had someplace that he felt comfortable with and at home and was familiar with before we passed away,” Eunice Morelli said.

They thought they found that place when they moved Marco, now 56, into a four-person group home in Afton.

But that home is now dealing with such severe staffing shortages that Matt and Eunice, who are 90 and 87 respectively, are having to provide demanding physical care several days a week. Most weeks, from Friday to Monday, Matt and Eunice bring Marco home to live with them in their small, two-bedroom apartment in their senior living facility.

“We sometimes think that’s probably why we’re living so damn long because of him,” she said. “We have to be there. We have to take care of him.”

In the last year, dozens of group homes have closed across the state after struggling to hire and retain workers. The closures have impacted nearly 700 people, according to ARRM, an organization that advocates on behalf of residential providers who care for people with disabilities.

“We’re seeing it in numbers that we’ve never seen before,” said Sue Schettle, who serves as CEO of ARRM.

Advocates say the crisis was made worse by the legislature’s failure to negotiate a deal that would have infused millions of dollars into the industry. In May, the regular session ended, and the supplement spending bill never passed.

“We need more money to support the workforce,” Schettle said. “At the end of the day, when nothing is done, it’s beyond frustrating.”

In June, families and providers rallied outside of the governor’s residence in St. Paul, urging Governor Tim Walz to call a special session and prioritize spending on disability services.

“If and when these group homes close, you tell me where these people are going to go,” said parent David Goldstein at the rally.

In a statement to 5 INVESTIGATES, a spokesperson for the governor said he “recognizes the issues facing residents in group homes,” as well as nursing home families across the state. “The Governor continues to push legislators to come back to the table because he recognizes that Minnesotans need assistance,” the statement read.

By Chris Serres, Star Tribune, July 29, 2022

By Jeanne Wolstencroft, PhD; Francesca Wicks, BSc; Ramya Srinivasan, MD; Sarah Wynn; Prof Tamsin Ford, PhD; Kate Baker, PhD; et al. The Lancet, August 3, 2022

Children with intellectual disability frequently have multiple co-morbid neuropsychiatric conditions and poor physical health. Genomic testing is increasingly recommended as a first-line investigation for these children. We aim to determine the effect of genomics, inheritance, and socioeconomic deprivation on neuropsychiatric risk in children with intellectual disability of genetic origin as compared with the general population.

IMAGINE is a prospective cohort study using online mental health and medical assessments in a cohort of 3407 UK participants with intellectual disability and pathogenic genomic variants as identified by the UK's National Health Service (NHS). Our study is on a subset of these participants, including all children aged 4–19 years. We collected diagnostic genomic reports from NHS records and asked primary caregivers to provide an assessment of their child using the Development and Well-Being Assessment (DAWBA), the Strengths and Difficulties Questionnaire (SDQ), the Adaptive Behaviour Assessment System 3 (ABAS-3), and a medical history questionnaire. Each child was assigned a rank based on their postcode using the index of multiple deprivation (IMD). We compared the IMAGINE cohort with the 2017 National Survey of Children's Mental Health in England. The main outcomes of interest were mental health and neurodevelopment according to the DAWBA and SDQ.

We recruited 2770 children from the IMAGINE study between Oct 1, 2014 and June 30, 2019, of whom 2397 (86·5%) had a basic assessment of their mental health completed by their families and 1277 (46·1%) completed a medical history questionnaire. The mean age of participants was 9·2 years (SD 3·9); 1339 (55·9%) were boys and 1058 (44·1%) were girls. 355 (27·8%) of 1277 reported a seizure disorder and 814 (63·7%) reported movement or co-ordination problems. 1771 (73·9%) of 2397 participants had a pathogenic copy number variant (CNV) and 626 (26·1%) had a pathogenic single nucleotide variant (SNV). Participants were representative of the socioeconomic spectrum of the UK general population. The relative risk (RR) of co-occurring neuropsychiatric diagnoses, compared with the English national population, was high: autism spectrum disorder RR 29·2 (95% CI 23·9–36·5), ADHD RR 13·5 (95% CI 11·1–16·3). In children with a CNV, those with a familial variant tended to live in more socioeconomically deprived areas than those with a de novo variant. Both inheritance and socioeconomic deprivation contributed to neuropsychiatric risk in those with a CNV.

Children with genomic variants and intellectual disability are at an increased risk of neuropsychiatric difficulties. CNV variant inheritance and socioeconomic deprivation also contribute to the risk. Early genomic investigations of children with intellectual disability could facilitate the identification of the most vulnerable children. Additionally, harnessing parental expertise using online DAWBA assessments could rapidly identify children with exceptional needs to child mental health services.

DIRECT SUPPORT PROFESSIONALS!

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.

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.

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over eighty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

Please click here to join, renew your membership, or contribute to VOR

Contact us at [email protected]