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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Have a Safe & Happy Memorial Day
Take time for remembrance of those we have lost.
Celebrate the lives they shared with us.
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VOR's Annual Members' Meeting
Celebrate VOR's 39th Year of Family Advocacy
ALL ARE WELCOME TO ATTEND!
Sunday, June 12, 2022
11:30 am - 5:30 pm (Eastern)
On Zoom
Schedule of Events
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11:30 am - Conference Begins - Opening remarks from President Joanne St. Amand, Presentation from VOR Board of Directors and Committee Chairs on the State of VOR
Guest Speakers:
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12:30 pm - Jill Escher - President, National Council on Severe Autism; Escher Fund for Autism, Past President of the Autism Society San Francisco Bay Area
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1:30 pm - Kit Brewer - Executive Director, Project CU - St. Louis, MO; Director, Coalition for the Preservation of Employment Choice (formerly the Coalition for the Preservation of 14c)
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2:30 pm - Micki Edelsohn - Founder, Homes For Life; Author, “Mom with a Megaphone”
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3:30 pm - Reports from the States - VOR members present updates on the State of their State. To be followed by an Open Networking Meeting
Auctions!
Opportunities to Meet with Other Families!
Exotic Teddy Bears!
Our World Renowned Cakeless Bake Sale!
All times are subject to change...
Registration is Open!
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Watchdog Urges N.J. to Expand Care for Residents with Developmental or Intellectual Disabilities
By Dana DiFilippo, New Jersey Monitor, May 24, 2022
A new annual report from New Jersey’s Disability Ombudsman Paul Aronsohn highlights several shortcomings that shut people out of services intended to protect them: the inflexibility of policies, the complexity of the system, and a “maddening lack of urgency” by those working in the system.
About 24,500 adults get non-residential services through the New Jersey Department of Human Services’ Division of Developmental Disabilities, and another 1,100 live in five state-run developmental centers, state data shows.
But Aronsohn suspects countless more are struggling outside of the system without vital supports, after they “fall off the grid” when they age out of the youth system at 21 and their families face navigating the dense, disconnected patchwork of adult services.
Because there’s no central entry point into the adult system of care, individuals must repeatedly reaffirm their lifelong disabilities to various health care providers, insurers, public assistance programs, and other entities — and risk losing services if any entity along the way denies their stated need, Aronsohn said.
Losing in-home supports can force families to institutionalize a loved one in out-of-home residential placements like a hospital, nursing home, or group home, he said.
Yet there’s an “alarming shortage” of residential options for children and adults with serious developmental disabilities who also need medical support, he said. The Christie administration began closing state-run developmental centers about a decade ago in favor of privately run group homes, a controversial shift in care that was intended to save money but sparked protest. The state has not been allowing new admissions to its remaining developmental centers, with a few exceptions, Aronsohn said.
“Despite all the talk about ‘home- and community-based’ services and supports, many people with complex medical needs and their families do not have access to the tools to make living in the community a safe, sustainable reality,” Aronsohn wrote in his report.
While state officials have talked about the merits of de-institutionalization, their actions instead have “fostered a re-institutionalization by effectively forcing many people with complex medical needs — children as well as adults — into hospitals and nursing homes,” Aronsohn added.
The salary for direct-support professionals who care for people with intellectual or developmental disabilities typically ranges from $13 to $16 an hour, while the Medicaid salary rate for private-duty nurses in New Jersey — about $28 an hour — hasn’t increased in more than a decade, according to Aronsohn’s report.
“There is a dangerous disconnect here,”
Aronsohn wrote. “We expect professionals to provide first-rate care and support to people with significant medical, physical, and/or behavioral needs, yet we often pay them at substandard rates and often give them minimal training. In so doing, we are effectively setting the system up for failure.”
That disconnect is more disturbing considering how much money the state pays to providers per individual — up to $1,275 a day for home health agencies and $1,000 a day for residential providers, according to the report.
Such trends especially are concerning in a state with one of the highest rates of autism in the country, Aronsohn added. One in every 35 children has autism, and about 122,000 New Jerseyans live with autism, including about 20,000 children and adults with severe autism, according to Autism New Jersey.
“Severe autism is not new, nor is it going away,” Aronsohn wrote in his report. “If anything, the challenge seems to be getting larger, more complex, and more dire. Yet despite all we know about severe autism — the high prevalence and the devastating consequences — we have yet to ‘sound the alarms’ and put in place the infrastructure needed to mitigate this human crisis.”
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NJ Disability Watchdog Criticizes Group Homes, Cites Abuse, Neglect 'On a Regular Basis'
By Gene Myers, North Jersey Online, May 27, 2024
New Jersey still can't ensure safe care for people with disabilities in group homes, according to a report by a state watchdog that says mistreatment is reported "on a regular basis."
“There is no question that abuse and neglect occur in some of our congregate settings," Paul Aronsohn, the state ombudsman for the disability community, said in the 30-page report, released earlier this month. "I cannot tell you how prevalent it is or why it occurs, but families share their horrifying pictures and stories with us on a regular basis."
Aronsohn cited a litany of complaints from residents of the state's 2,037 congregate care programs and their families, including verbal and physical abuse, the withholding of food, medication mix-ups and unsanitary conditions.
He credited the state Department of Human Services with taking some steps to address abuse, such as implementing the Stephen Komninos Law in 2018, requiring the state to conduct unannounced site visits to group homes and drug testing of staff as well as to notify parents or guardians when incidents occur.
Komninos, 22, choked to death in 2007 after he was left unsupervised by staff at the South Jersey home where he lived.
Human Services Department spokesman Tom Hester said the department was reviewing Aronsohn's report and took his concerns seriously, but he also defended the state's oversight of group homes.
In implementing the Komninos Law, the department has conducted 46,000 face-to-face visits with group home residents, resulting in 829 reports "covering a broad range of issues" that were flagged for follow-up or investigation, Hester said. As a result, 177 people have been added to a registry of offenders against individuals with developmental disabilities.
Gov. Phil Murphy's administration “has taken important steps to address” the issue, according to the ombudsman's report. But more needs to be done, Aronsohn wrote.
Even after “the disturbing revelations” that came out of a 2019 investigation into two Bellwether Behavioral Health group homes in West Milford, “no new programs or processes have been put in place to ensure that other provider agencies do not engage in the same egregious practices,” he added.
Two residents at separate Bellwether homes in West Milford died from choking on food in May 2017. The state shut down the for-profit provider of residential and day programs after an independent investigator found that its homes were unclean, smelled of urine and had rotten food in the refrigerator. One home was found to have mixed up residents’ medications.
Aronsohn, a former Ridgewood mayor, said the state needs to “dramatically change” the way it staffs home settings, with better training and more money for those who help residents with everyday life.
The disability community has long pushed for higher wages for those who assist with daily needs, including bathing, clothing and feeding around the clock.
The state has approved three rate increases for the aides since 2019, and another is planned for January 2023. All four totaled will account for an additional $4.75 per hour for each worker, bringing the median wage to $17.86 an hour, according to the state.
Aronsohn offers two “no-cost, easy-to-implement recommendations” for all of the issues listed in his report. First, he said, “People in authority should personally spend time with people with disabilities and their families.”
Outsourced case managers, advisory boards and intermediaries have cut decision makers off from the people they are serving. In addition, those in authority should hire and appoint people with disabilities and their families, who currently don’t have a seat at the table.
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California - Racial Disparities Persist at CA Regional Centers for Disabled Kids, Report Says
By Emily Alpert Reyes, LA Times, May 25, 2022
Racial and ethnic gaps in spending on services for California children and teens with developmental disabilities have persisted, despite California investing tens of millions of dollars in efforts to address such disparities, a new report has found.
The report, released Wednesday by the legal advocacy group Public Counsel, found that at most of the California regional centers, which assist developmentally disabled people across the state, spending inequities had worsened for Latino youth during the last budget year. Even as that gap narrowed statewide, it was widening at many individual centers.
Despite long-standing awareness of the problem, “we still have a system of separate and unequal services for children with disabilities,” said Sharon Balmer Cartagena, directing attorney of the Children’s Rights Project at Public Counsel.
The report also found that as the COVID-19 pandemic dragged on, a growing number of young people overall were left “unserved” by their regional centers. More than a third of clients ages 3 to 21 did not get any services purchased by their regional centers in the last budget year, according to the report.
The California Department of Developmental Services, which oversees the coordination of services through regional centers, said it had not had sufficient time to review the report but added that “service access and equity remain a priority” for the department, which has launched initiatives that include implicit bias training for regional center staff and a “pay differential” for bilingual workers to increase access for people who speak languages other than English.
DDS is committed to exploring “additional strategies to reduce inequities” within the system, it said.
Amy Westling, executive director of the Assn. of Regional Center Agencies, said “we have made a tremendous amount of progress in certain areas.” Westling, whose association represents the network of 21 regional centers across California, said that “we’re all committed to making sure that people have access to the services that they need.”
California provides supportive services to children with developmental disabilities through a system of regional centers that contract with the Department of Developmental Services. The centers, which are private nonprofits, provide case management and arrange for services for people with cerebral palsy, autism, epilepsy and intellectual disabilities.
Disability rights advocates have complained that the system too often forces parents to fight for assistance. Regional centers “are putting up barrier after barrier for people to be able to access services that they have a legal right to,” said Judy Mark, board president of Disability Voices United, which advocates for people with developmental disabilities and their families.
Public Counsel found that during the budget year that ended in June, Latino youth ages 3 to 21 who received services were getting 80% of the spending levels for white youth of the same ages who received services.
That was an improvement over previous years, but the report found that a single center serving South Los Angeles and parts of Southeast L.A. County accounted for much of that improvement — and that at most other centers across California, gaps in spending between Latino and white children had worsened over six years.
Racial gaps also persisted for Asian American youth and were especially stark for children of “other ethnicity” but had closed last year for Black youth, the report found.
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Arizona Enacts Law to Prevent Abuse in Group Homes
By Tom Joyce | The Center Square
Arizona recently enacted a law that hopes to provide greater independent oversight of care for those living with developmental disabilities.
Arizona Gov. Doug Ducey recently signed SB 1542 in hopes of doing it. The bill, sponsored by Senator Nancy Barto, R-Phoenix, will make a few changes. The bill saw near unanimous support in both legislative chambers.
The law will allow the installation of video cameras in common areas of group homes, nursing-supported group homes, and intermediate care facilities. It will also prevent contracted service providers of group homes and intermediate care facilities from preventing their installation if clients and their families agree to pay for the costs associated with these devices.
Barto said that she hopes the law will prevent abuse from happening in these types of facilities.
“We’ve received countless reports and testimony from families who have experienced horrific problems from service providers- especially within many group homes,” Barto said in a press release. “Matty, an 18-year-old who is severely autistic with the functionality of a 6-year-old, has been exposed to terrible traumas from staff, including those who were working while under the influence of drugs, verbal abuse and physical assaults against him that led to black eyes and head injuries, failure to provide medical care for his infections, even soaking him with a garden hose and shoving him in a closet as responses to his behaviors and agency oversight was not effectively addressing it.
“After his family purchased and installed a camera system on their own, they are now seeing the benefit of a much safer environment. We want to ensure the same for other families experiencing such appalling events.”
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Pennsylvania Will Delay Closures of Two Institutions for People with Intellectual Disabilities
By Kate Giammarise, 90.5 WESA, May 20, 2022
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The state is delaying the scheduled closures of two state centers for people with intellectual disabilities; the centers are still slated to close, but the timeline for doing so has been pushed back, state human service officials announced.
Polk State Center is in Venango County in northwest Pennsylvania, roughly 80 miles north of Pittsburgh; White Haven State Center is in Luzerne County.
The centers are slated to close Nov. 30, later than originally planned, “due to challenges with the pandemic,” state Department of Human Services officials said.
State officials in 2019 announced they would shutter the centers as part of a long-standing push to move people out of large institutions and into more community-based settings.
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Numerous disability advocacy groups have pushed for the state centers to be closed. However, family members of some people who live there, unions representing workers at the centers, and some legislators and elected officials have said the centers should remain open.
A group of families who have relatives at the centers filed a federal lawsuit over the closures in early 2020; the litigation is ongoing.
State legislators passed a bill in early 2020 that would have put a moratorium on the closures; it was vetoed by Gov. Tom Wolf.
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Iowa - Glenwood School District Wants To Be Proactive After GRC Announcement
By Joel Stevens, The Opinion-Tribune, May 25, 2022
When the state of Iowa announced in April it was shuttering the Glenwood Resource Center in 2024, the future of the facility, its 150 clients and more than 600 employees weren’t the only lingering questions.
The closing of the facility – and the state’s intended sale of the property – could have deep impacts on the Glenwood Community School District in both its enrollment and it’s future building infrastructure. The 146-year-old facility houses the district’s central office, Head Start program and its Kids Place pre-k/daycare in the same building at 103 Central.
On April 7, Gov. Kim Reynolds announced the residential center the cares for Iowans with intellectual and developmental disabilities will close in 2024. The GRC has been plagued with issues for several years, including multiple investigations by the Department of Justice and the Iowa Department of Health and Human Services that revealed accusations of neglect, abuse and illegal experimentation on clients.
Reynolds stated in her announcement that the decision to close GRC was “difficult” but that her office and state will work with families to find new placement residents in other facilities and new job opportunities for staff ahead of the facility’s closure. Current staff members will also be offered incentives to remain on the job and assist with the transition.
The transition surprised many in the community who weren’t aware closure was being considered by the governor of DHHS.
“We were a little bit shocked when we heard the news,” said Dr. Devin Embray, Superintendent of the Glenwood Community School. “We were led to believe it (the GRC) was going to be re-structured into a different type of service or different type of care, but it wasn’t going to close. But then it comes out that it’s going to close. We were taken back and shocked initially.”
Embray does not know the exact numbers, but he estimated the district has 100 to 150 students whose parents work at the GRC. With fall enrollment for the district underway, the district is asking parents to include their employer on registration documents to better gage those numbers and their potential impact.
Over the next two years, the care of those clients who will transition out is the priority, Embray said, followed closely by proactive ways to keep families of GRC employees in the community with re-training and new employment opportunities.
“The majority of those employed up there are in direct care and a many of them may not have a certification beyond a high school diploma,” Embray said adding the “blue collar” and medical personnel will likely have easier “access points” to new employment.
“Whereas there’s this larger group of direct care folks who may have 20 years in and have a high school diploma and are asking, ‘What are we going to do?’’ Embray said.
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Arkansas - Home Aide Shortage Threatens Care for Developmentally Disabled Arkansans
By Juliet Schulman-Hall and Benjamin Hardy, The Daily Citizen, May 20, 2022
In December, Gov. Asa Hutchinson announced a plan to bring relief to thousands of families stuck on a waiting list for Medicaid-funded services for people with intellectual and developmental disabilities.
Under the governor’s plan, Arkansas will spend an additional $37.6 million each year to expand a program that pays for direct care workers and other services that help developmentally disabled people stay in their homes or in a community-based setting, as an alternative to institutionalization. These home and community-based services are sometimes called “waiver” services because they are funded through a waiver agreement between federal Medicaid authorities and the state. About 5,000 clients are now on the Arkansas waiver program.
The governor has said all of the roughly 3,200 families now on the waitlist — some of whom have been waiting for more than a decade — should be served by June 2025. Yet the plan may run into a problem. Arkansas, like many states, is facing a shortage of direct care workers, the frontline staff who help disabled, elderly and other clients with daily activities like eating, bathing, getting dressed and using the bathroom.
Teresa Dodson, 49, is the primary caregiver for her 22-year-old son, Nathan, who has autism and requires around-the-clock supervision.
“The governor has been releasing more of the waitlist people to start receiving coverage services,” she said. “That's fabulous. It's not going to help us families if they can't find staff. And the more people we release off of that waiver waiting list, the more people that need staff.”
From 2017 to 2020, the number of nursing assistants, home health aides and personal care aides in Arkansas dropped slightly, from about 41,000 to about 39,000, according to PHI, a national nonprofit that advocates for direct care workers. The workforce likely decreased further over the past two years, fueled by the COVID-19 pandemic and high demand for low-wage workers in other sectors.
Direct care workers are typically paid minimum wage — or close to it — to perform physically and emotionally demanding work. Arkansas’s minimum wage is $11 an hour.
Leaders of home and community-based service providers say finding workers has become much harder over the last year and a half. In January 2021, Easterseals Arkansas had about 14 openings for direct care workers, according to Ron Ekstrand, the CEO of the Little Rock-based provider. By April of this year, it had 52 openings. (Easterseals employs about 250 direct care workers total.)
“There’s something wrong with a system in which we can’t find enough people,” Ekstrand said.
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Texas - Intellectual and Developmental Disability System Redesign Advisory Committee (IDD SRAC) System Adequacy (SA) Subcommittee Meeting
There is not a physical location for this meeting. Attendees who would like to provide public comment should see the Public Comment section below.
- Welcome, call to order, and roll call
- Consideration of March 2, 2022, IDD SRAC SA Subcommittee draft meeting minutes
- Senate Bill 50, 87th Legislature, Regular Session (2021) update
- IDD SRAC SA recommendations for 2022 Legislative annual report
- STAR+PLUS Pilot Program updates
- Public comment
- Review of action items and agenda items for next meeting
- Adjourn
Public Comment: The Texas Health and Human Services Commission (HHSC) welcomes public comments pertaining to topics related to any agenda items noted above. Members of the public are encouraged to participate in this process by providing written public comment to HHSC by emailing [email protected] no later than 5:00 p.m., May 30, 2022. Please include your name and either the organization you are representing or that you are speaking as a private citizen. Staff will not read written comments aloud during the meeting, but comments will be forwarded to State staff and Subcommittee members for their consideration. Comments should not include confidential information or protected health information.
Members of the public may also use the GotoWebinar Q&A section to submit a request to provide oral public comment only. The request must contain your name, either the organization you are representing or that you are speaking as a private citizen, and your direct phone number. Do not include confidential information or protected health information in comments.
Public comment is limited to three minutes. Each speaker must state their name and on whose behalf they are speaking (if anyone). Public members who are using handouts are asked to provide an electronic copy in accessible PDF format that will be distributed by HHSC staff to Subcommittee members and State staff. Handouts are limited to two pages (paper size: 8.5” by
11”, one side only). Handouts must be emailed to HHSC and include the name of the person who will be commenting. Do not include confidential information or protected health information in handouts. Staff will not read handouts aloud during the meeting, but handouts will be provided to Subcommittee members and State staff.
Note: These procedures may be revised at the discretion of HHSC.
This meeting is open to the public. No reservations are required, and there is no cost to attend this meeting.
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VOR's Annual Meeting & Legislative Initiate help our families to participate in our organizations, to reach out to their Members of Congress, and to become better advocates for their family members with I/DD.
Those who have attended our June meetings in years past will recall what they spent on transportation to and from D.C... what hotel rooms cost, and what other expenses they incurred while in Washington. We ask that you consider giving a share of that expense, maybe part of the cost of airfare or a night at the Hyatt on Capitol Hill,
or even the cost of a quick lunch in the Longworth Cafeteria.
Any and all contributions will be graciously accepted.
Please help us to help you.
Please help us to help families like yours.
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Brown, Portman Introduce Bipartisan Legislation to Reform Supplemental Security Income Program to Stop Punishing Americans For Saving for Emergencies
Senators Introduce First Significant Bipartisan SSI Legislation in More than 30 Years
Joint Press Release from Senator Sherrod Brown (D-OH) and Senator Rob Portman (R-OH)
Today, U.S. Senators Sherrod Brown (D-OH) and Rob Portman (R-OH) announced the introduction of the Savings Penalty Elimination Act to update the asset limits for Supplemental Security Income (SSI) beneficiaries, which would enable beneficiaries to have more savings in case of an emergency without affecting their benefits. The senators’ bill, the first significant bipartisan legislation in decades, would bring the SSI program into the 21st Century and ensure disabled and elderly Ohioans are able to live with dignity.
An often-forgotten part of America's Social Security system, SSI is a federal program that provides vital income assistance to nearly 8 million elderly and disabled Americans with low-incomes and limited resources, including over 1 million disabled children. But due to decades of shameful federal neglect, the program now consigns millions to deep and enduring poverty, when it should instead offer a lifeline out of it.
“We shouldn’t be punishing seniors and Ohioans with disabilities who do the right thing and save money for emergencies by taking away the money they rely on to live,” said Brown. “SSI’s arbitrary and outdated rules make no sense. Our bipartisan bill would update the old rules for the first time in decades and allow beneficiaries to save for emergencies without putting the benefits they rely on to live at risk.”
“Rising costs and inflation is hurting all Americans, but especially our nation’s seniors and those with disabilities. Yet the Supplemental Security Income program that serves these vulnerable populations hasn’t been updated in decades and punishes them for trying to save responsibly,” said Senator Portman. “I am pleased to introduce this legislation with Senator Brown to update SSI’s restrictive asset limits and better meet the needs of vulnerable seniors and Ohioans with disabilities.”
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CMS Proposal to Suppress Hospital Safety Data Angers Advocates
- Agency says COVID disruptions, staff shortages hamper ability to fairly score poor performers
By Cheryl Clark, MedPage Today May 20, 2022
Large employer coalitions and consumer advocates are angrily pushing back against a Centers for Medicare & Medicaid Services (CMS) proposed rule to suppress public reporting of key measures of preventable hospital-caused harms, such as pressure ulcers or falls resulting in hip fractures.If the rule is finalized, CMS would not calculate scores under the Hospital-Acquired Condition Reduction Program (HACRP). Hospitals would still report on some safety measures, but certain scores -- in particular those for the 10-measure Patient Safety and Adverse Events Composite (PSI 90), a key component of the HACRP -- would be hidden from public data files and would not appear on the CMS Hospital Compare website.
Furthermore, CMS would not dock hospitals in the worst-performing quartile 1% of their Medicare reimbursement, as it usually does, and would end up paying these hospitals what would normally be withheld -- an estimated $350 million -- an amount that would be lost to the Medicare trust fund.
The agency gave several reasons -- all related to COVID-19 -- why hospitals need to be let off the hook, including wide variation in performance scores; unprecedented changes in clinical guidelines, treatments, and drugs; and rapid changes in what clinicians understand about a pathogen of unknown origin. In particular, they noted huge shortages of healthcare personnel and high rates of burnout, specifically among nurses, which could affect a variety of measures, such as infection rates and avoidable falls.
CMS began suppressing some measures at the beginning of the pandemic in 2020, and many assumed that would be the end of it.
The CMS proposal "is outrageous," Bill Kramer, executive director for health policy at the Purchaser Business Group on Health, told MedPage Today.
"Patients will be unable to know whether the provider they want to go to has more patient safety problems, more risky providers, so clinicians as well as purchasers and policymakers will be unable to identify and help patients choose those hospitals with the best patient safety record," he said. Without that information, patients are more likely to suffer from avoidable accidents, "and some of them will die as a result."
James Gelfand, executive vice president of public affairs for the ERISA Industry Committee, a trade association representing about 100 of the nation's largest self-insured employers who purchase health benefits for their employees and families, called the CMS proposed rule "ludicrous."
"Essentially what they're saying is that patients got treated badly, so they're going to report badly, and so the hospitals are going to score badly. And, therefore, we have to keep the data secret," he said.
"The federal government has data that would be really useful in making decisions about plan design and decisions about whether to steer people to a particular hospital or health system, but they're not going to give it to you because it's bad for the hospitals? I can't express to you how alarming that is," he noted.
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Murray, Duckworth, Colleagues Call for GAO Study into the Barriers Americans with Disabilities Face Accessing Healthcare
Press Release from the Senate HELP Committee, May 20, 2022
U.S. Senator Patty Murray (D-WA), Chair of the U.S. Senate Health, Education, Labor, and Pensions Committee, joined a letter led by U.S. Senator Tammy Duckworth (D-IL) to the Government Accountability Office (GAO) requesting that the agency conduct a comprehensive, wide-ranging study into the persisting barriers that Americans with disabilities of all backgrounds experience in accessing healthcare, including access to medical treatment, services, equipment and more. U.S. Senators Bob Casey (D-PA), Chair of the U.S. Senate Special Committee on Aging, Kirsten Gillibrand (D-NY), Elizabeth Warren (D-MA), and Sherrod Brown (D-OH) also joined the letter.
“We write to request that the Government Accountability Office (GAO) conduct a study on barriers people with disabilities experience in accessing healthcare—including reproductive healthcare—in the United States,” the Senators wrote in their letter. “Even though discrimination based on disability is prohibited by law, people with disabilities continue to face issues with accessibility when it comes to getting the healthcare they need, when they need it. The lack of accessible healthcare contributes to and exacerbates health disparities experienced by people with disabilities.”
From inaccessible facilities and medical equipment to a lack of communication through interpreters, transcriptions or accessible medical information, members of the disability community continue to be denied their rights despite having strong protections to access and receive equitable care under the law. The Senators also note that the current data and studies regarding health disparities among the disability community contain significant gender and racial gaps that fail to fully capture the severity of this issue for all Americans living with a disability.
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Autism & Medical Research: |
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Abnormal Development of Brain’s Visual System May Contribute to Autism
By Jim Dryden, Washington University School of Medicine in St. Louis, May 26, 2022
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A research team, led by Washington University School of Medicine in St. Louis and the University of North Carolina (UNC) School of Medicine, has identified abnormalities in the development of the brain’s visual system in infants that may predispose them to developing autism.
The research, published May 26 in the American Journal of Psychiatry, suggests that irregularities in the brain’s visual system may alter the way that some babies experience their surroundings and interact with others, thus further affecting brain development and potentially contributing to autism spectrum disorder.
The researchers conducted MRI brain scans on 384 babies at high risk of autism because they have older siblings with autism spectrum disorder. Indeed, almost 25% of the infants in the study went on to be diagnosed with autism. Their brain scans revealed abnormalities in the size, white matter and functional connectivity of the babies’ visual systems, and such irregularities were present long before any symptoms of autism were detectable.
“These abnormalities in the brain’s visual structures track very nicely with our earlier research into the eye movements of children with autism,” said John N. Constantino, MD, one of the study’s senior authors, the Blanche F. Ittleson Professor of Psychiatry and Pediatrics and director of the Division of Child & Adolescent Psychiatry at Washington University. “In past research, we’ve noted that children with autism often look less at people’s faces than children without the disorder. In this study, we’ve seen that abnormal development of the visual system may be rooted in genetics because the extent of alterations in the visual systems in children as young as 6 months old was associated with the severity of autism traits in their older siblings.”
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The children in the study were scanned at 6, 12 and 24 months of age, and 89 of those babies went on to develop autism themselves. That’s almost a 1-4 chance, significantly higher than the 1 in 54 children currently affected by autism spectrum disorder in the United States.
The researchers measured brain volume and surface area in the occipital cortex, a brain region involved in vision. They also examined white matter in a part of the brain previously linked to how infants track visual stimuli in the environment. In addition, the researchers documented the autistic traits in older siblings.
They found that in 6-month-olds who went on to develop autism by their second birthdays, brain features related to the structure and function of the visual system were different from infants who didn’t develop autism.
“It is particularly notable that we were able to demonstrate associations between brain findings in these infants and the behavior of their older siblings with autism,” said co-senior author John R. Pruett Jr., MD, PhD, a professor of psychiatry at Washington University. “The convergence of brainwide fcMRI results with structural and diffusion MRI findings strengthens our confidence in these discoveries, which now can be tested in a new group of 250 infants being recruited for another study because they have affected siblings and are at very high likelihood.”
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Direct Support Professionals:
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Opinion - Professionals Caring for People with Disabilities Need to Earn a Fair Wage
By Naomi Davenport and Helena Johnson, Penn-Live Patriot-News, May. 26, 2022
We are Direct Support Professionals (DSPs), and we support people with Intellectual Disability / Autism (ID/A). The people we support often have multiple and highly complex medical, intellectual, and sometimes physical challenges. We are trained to provide skilled care, first aid, cooking, bathing, communication, physical assistance, and more. The medical and behavioral challenges of the people we serve require round-the-clock support.
Our jobs are rewarding, risky, enjoyable, and exhausting. We see colleagues leaving their jobs because they can’t pay their bills with the wages the state funds, and we are heartbroken as we watch the people we serve lose the DSPs that love and care for them. So we are speaking up.
We support the General Assembly approving $65 million in state funds, to be matched by federal funds, that would allow DSPs to paid the same amount that the state pays its own DSPs who work for the Department of Human Services. Community DSPs earn so little that more than 60% of DSPs leave their job in the first year. Few people can survive on the poverty wage the state has set for community programs.
We love working with people with ID/A, helping them be happy, safe, active with their families, with many employed and contributing to their local community.
People with ID/A deserve to be happy and to live like everyone else, even though some need significant supports. They are joyful and grateful, and they inspire us every day. And we love them. We love knowing we are supporting them in their homes, activities, and jobs.
It’s not fair that the state has funded a rate for us that doesn’t give us a living wage. When you talk about “essential workers,” you’re talking about US. Many of the people we serve would literally not survive without the supports we provide to help with cooking, feeding, and administration of medications.
During the pandemic, the DSP workforce has continued to work 24/7/365. How many professionals can say the same?
We want to suggest that governor and legislators consider doing our jobs for just one day. They would immediately then increase the funding providers have requested. DSPs are not paid what they should be, especially compared to people working in jobs that don’t have the training, dedication, or responsibility we have.
We are sometimes at risk when we care for a person in a wheelchair, for instance. And if we cannot prepare food for these people, they don’t eat. If we don’t bathe them, they have bad hygiene. If we leave a person in a chair by themselves, they will stay there until someone else comes around. They need us. And we love our work.
But the ongoing training we get and the regulations our provider has to work with are not even comparable to those of people who work in a convenience store or restaurant.
DSPs cannot continue to function like this. We have to sacrifice our own income potential to stay in our jobs. How long can we continue to do that? We don’t have enough staff. They are leaving. And why wouldn’t they? They can make $18 at the local convenience store or warehouse job.
Why stay here for hundreds less per month and with more risk and responsibility? Because we love the people we support and the happiness we help them achieve every day. We are very fulfilled, personally and professionally and the people we work with are safe and happy.
But we know DSPs that work two jobs just to feed and shelter their own families. How long can they keep doing that? We have co-workers who work an 8-hour day and then come to work here for another 12 or more hours. That often means overtime, which costs us for child care, after-school care, and more, and we’re tired. So tired.
The state is our only funding source. The people we help often have no family to help them, and if they do it’s probably elderly parents who cannot provide for them much longer. One of the people we support has a dad in the hospital as we write this! So funding is not just about paying us a living wage. It’s about making sure these vulnerable Pennsylvanians have well-trained, consistent, professional support.
What if you were disabled or had a child who was disabled. How would you feel about letting someone untrained and inexperienced care for that loved one and making less than the average convenience store or fast-food worker?
We have homes, insurance, cars, food, and children who want to go to college. How can we pay for that on this salary? Could you do it?
It’s time to adequately fund rates for DSPs.
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VOR ❤️s OUR 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.
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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.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.
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Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.
For 39 Years, VOR Has Been That Voice
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 engaged in over sixty 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,
In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.
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Shop at Amazon?
Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!
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Just go to smile.amazon.com instead of the regular Amazon site, and sign in with your account credentials.
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Amazon should then give you a prompt to Select A Charity.
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Type into the search box: VOR - Elk Grove Village and click on the Select button.
- Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
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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?
droppable-1631310642232
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836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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FACEBOOK: /VOR ----- TWITTER: @VOR_NET ----- YouTube
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