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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VOR NETWORKING MEETING
Via Zoom - February 24th
4:00 pm EST, 3 pm CST, 2 pm MST, 1 pm PST
VOR invites you to join us for our 2nd nationwide Networking Zoom Meeting!
At this meeting we will talk about the shortage of DSPs- Direct Support Professionals- those people who work directly with our loved ones. What is going on in your state or region to address this problem, which has reached crisis levels in some areas? We welcome you to share with us your concerns, advocacy efforts, progress, and ideas concerning alleviating this shortage.
At our first Networking Meeting on November 11, 2021, we had attendees from 13 states. It was fun and enlightening to meet and talk with everyone. Hope you can join us on February 24.
Please RSVP us at info@vor.net by February 20, if you would like to attend. We will send the zoom link a few days before the meeting.
VOR’s mission is to advocate for a full continuum of care for our loved ones. Many of the members of VOR have family member members with severe or profound disabilities, often with medical or behavioral issues. We support a full range of services and housing options to meet the needs of all people.
To register for the event, or if you have any questions or suggestions for future topics, please contact us at info@vor.net
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SAVE THE DATES!
VOR's Legislative Initiative, 2022
Sunday, May 15, 2022
To be followed by Zoom meetings with Congressional Offices May 16 - 19
VOR Annual Meeting
Sunday, June 12, 2022
Due to the ongoing Covid pandemic and the continued lockdown of many congressional offices in Washington, D.C., we are holding our annual events online via Zoom again this year. We ask members to please mark the dates in your calendars. More information on how you may participate in these events will be coming soon.
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For years, VOR has been a Voice of those with severe and profound intellectual disabilities and their families. Throughout those years, we have stood up against organizations and self-advocates who claim to speak for our loved ones with I/DD, who claim that their disabilities give them greater insights into the needs of our family members. Many of these people have college degrees and jobs in the I/DD industry. Many have never visited an ICF, or have met face-to-face with people who rely on higher levels of care. Yet, they continue to dominate the conversation about what people with I/DD need, and to promote one-size-fits all policies that they have tailored to their own needs.
Two such articles came across my desk this week. Both rely on the opinions of prominent members of the Autistic Self Advocacy Network, and both were published by national journals and presented without representing dissenting opinions or the voices of those representing people with the most significant intellectual disabilities.
Originally, I had intended to ignore these two articles. But after considerable debate, I decided to highlight them in this week's Newsletter. The goal is not to validate the views of the authors, but to illustrate the need for our families to speak out for our loved ones, and not to allow others who don't know us to speak for us:
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Dividing Up the Autism Spectrum Will Not End the Way You Think
By Julia Bascom and David Perry, The Nation, January 31, 2022
"The effort to divide up the autism spectrum has emerged mostly because some parents whose kids need a lot of support want to differentiate their child from autistic adults, whom they see as “not like their child.” Such parents believe that they are fighting a different battle than that of autistic adults who can, at times, pass as neurotypical; they see their kids as needing different kinds of support and different levels of restriction. But they are wrong on all counts."
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Debate Over Applied Behavior Analysis At A Crossroads
By Blythe Bernhard, Disbility Scoop, February 4, 2022
The therapy long considered the gold standard for autism faces an increasingly virulent opposition, mostly from people who experienced it in childhood.
Applied behavior analysis, or ABA therapy, involves a range of interventions based on the theory that the environment influences behavior. The therapy can reduce challenging behaviors and improve the quality of life for people with autism through positive reinforcement, advocates say.
But detractors say the goals of the method are to “normalize” people with autism by camouflaging or suppressing their identity and personality to conform to a neurotypical standard.
The debate is coming to a head this month as the Autism Society hosts three town hall meetings in preparation for a position paper on ABA to be released later this year.
But many adults with autism consider interventions based on ABA to be unethical and harmful, said Zoe Gross, director of advocacy for the Autistic Self Advocacy Network, which published a report in October opposing ABA.
Gross said she received ABA as a child in school, and her classmates would mimic the therapist by saying things like, “My goal for you is to sing less loudly in choir.”
“I think that as a kid I got clearly the message that the way I was was wrong, and I wasn’t supposed to be that way,” said Gross, who considers herself a survivor of ABA.
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Pennsylvania Supreme Court Forms New Task Force Focused on Helping those with Autism Spectrum Disorders in Court System
By Keith Schweigert, Fox 43 News, February 1, 2022
The Pennsylvania Supreme Court announced this week it has created a new taskforce focused on issues affecting those with autism and intellectual disabilities involved in the justice system.The creation of the task force was necessary to help make justice accessible for all Pennsylvania residents, court officials said in a press release.
The task force is part of a partnership with the Pennsylvania Courts' Office of Children and Families and led by Justice Kevin M. Dougherty on behalf of the Supreme Court.
It will focus on providing increased training opportunities for judges, helping further identify gaps in the system for those with autism and intellectual disabilities, and creating a local roadmap to resources and services, the court said.
“We learned so much from our listening tour – identified challenges, discussed experiences and committed to working together to find solutions -- but what we really learned is how much work there is to be done,” said Dougherty. “By creating a taskforce and partnering with our Office of Children and Families in the Courts who work primarily with children and families in the dependency court system, we’re positioning ourselves to better assist those who need it before they enter the court system.
"If we can provide support to a child before they are court-involved and put a plan in place to help that child and their family before they continue down a challenging path–that’s a life changed ,and a family saved. The momentum created by the regional tours, amplified by the work of the taskforce will allow us to replicate what we learned within the entire court system."
With one in 46 children and one in 59 Pennsylvanians diagnosed with an Autism Spectrum Disorder, judges hearing juvenile, orphans, and family court cases are sure to have individuals living with autism come before them.
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Arizona Lawmakers Move 3 Bills Aimed at Improving Oversight, Accountability of Group Homes
By Kathy Richie, KJZZ (NPR), February 3, 2022
Though it’s still early in the new Arizona legislative session, the Senate Health and Human Services Committee has passed a trio of bills aimed at increasing oversight and accountability in group homes that serve people with intellectual and developmental disabilities.
Lawmakers heard devastating testimony from parents about their children’s experiences in group homes.
"Multiple times staff accidentally gave my son another resident psychotropic medication," said Susan Sunseri who was talking about her then 16-year-old son. Sunseri also said there were no cleaning supplies and very little food at the group home. "When I asked staff when they would be shopping for food, they claimed they had run out of food money and didn't know when they would have more."
Another parent Cynthia Elliot showed photographs of burns her adult daughter sustained.
"No one has ever been able to explain how she got those second-degree burns," she said "And I will tell you, you do not want to experience listening to your handicapped child scream while they treat burns at a burn unit."
One of the bills that moved would require video cameras in common areas of group homes. Another measure would create a new category of group homes for individuals with behavioral challenges.
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Most weeks, I do try to refrain from editorializing and allow the news to speak for itself. This week, I find myself failing to meet that standard.
The following article has confounded me. Nebraska lawmakers are proposing a bill that would provide in-home, ICF-level services for under $10,000 per year. This would be remarkable, to say the least. We hope for the best, but fear for the worst.
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Developmental Disability Waiver Advances
Nebraska State Legislature Unicameral Update, February 1, 2022
Sen. Machaela Cavanaugh
LB376, as introduced last session by Omaha Sen. Machaela Cavanaugh and amended on general file, would require the state Department of Health and Human Services to apply for a three-year Medicaid waiver to start a family support program for developmental disability services. The program would:
• have an annual budget for long-term services and supports capped at $10,000 per person;
• allow approximately 850 individuals currently on the state’s wait list to participate;
• offer Medicaid eligibility for children with disabilities by disregarding parental income;
• be administered by the state Division of Developmental Disabilities of DHHS; and
• allow families to self-direct services.
The family support program would be set at an intermediate care facility institutional level of care.
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North Carolina has a Plan to Support People with Disabilities Living Outside Institutions. Does It Do Enough?
By Lynn Bonner, The Pulse, February 1, 2022
A 2021 assessment of living arrangements and community support for North Carolinians with developmental disabilities or severe mental illnesses reinforced what’s become a truism in the state: it spends a disproportionate amount of public money on institutional living that keeps people segregated from larger communities.
The state Department of Health and Human Services released a plan in January that it intends to use as a guide toward keeping people from entering institutions and helping those who want to leave, in keeping with the U.S. Supreme Court’s 1999 Olmstead decision that services should be available to allow people to live and work in their communities.
The two-year plan lays out 11 priorities that include closing gaps in community services, making it easier for people to live in communities, and finding ways to hire and keep the frontline support staff who help people with disabilities live outside institutions.
Corye Dunn, public policy director at Disability Rights North Carolina, said the state plan doesn’t do enough.
“The state characterized as a final plan and a living document,” she said. “We see it as too far from where we need to be to be considered final. We’re treating it as the next of what may be many drafts.”
For example, under a 2012 court settlement, North Carolina is required to move people with mental illnesses out of adult care homes and into communities. The Olmstead plan says the state will find homes for an additional 750 people under its Transitions to Community Living program, including 450 who will move from adult care homes, by the middle of this year.
That sounds like a lot, Dunn said, but only a fraction will likely end up staying in their own homes.
“I want to see actual investments and commitments to change,” she said.
The Technical Assistance Collaborative and the Human Services Research Institute defined the state’s challenges in its 2021 assessment. The state doesn’t have enough affordable housing or support services. In 2019, North Carolinians used community mental health services far less than the national average. That year, 14,000 people with mental illnesses lived in places like assisted living facilities or group homes. That’s not counting those who live in adult care homes.
Staff turnover is high in low-paying, community-based support jobs.
There’s limited state funding to cover community services for low-income, uninsured adults. State facilities are the back up.
DHHS has lots of data, but it’s not organized. The agency hasn’t been able to use its data to improve services and can’t say how the mental health system is performing.
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Pensylvania - A Pandemic Shortage of Home Health Workers has Left Families Struggling to Find Care
By Jason Laughlin, Philadelphia Inquirer, January 31, 2022
Finding a home health aide became [a] long ordeal.
“I’m having to give her 110% of myself,” said Jessica Berger, whose daughter Zoe Potack, 11, has severe autism, “but I have a husband and I have my [other] daughter. It doesn’t feel good to not be able to give my time and attention to all those other things and people that matter.”
Even before the pandemic, turnover rates in home health ranged from 40% to 60%. In Pennsylvania, which as of 2020 had the fourth most home health and personal aides in the country, median pay is a little less than $13 an hour. Then COVID-19 compelled people on lockdown to cancel their home health aides, some fearing that would bring the virus into their homes. Hospitals canceled nonurgent surgeries, reducing the number of people who typically would need home care.
A survey this month of 122 members of the Pennsylvania Home Care Association found that their nonmedical care worker staffs have declined by a quarter since the beginning of 2020 and skilled medical care workers by 20%. More than 90% of providers surveyed said they had declined requests for care since 2020 due to staff shortages.
Some home health workers have found more lucrative jobs and may never return, said Denise Tyler, an expert on aging policy and long-term care with the nonprofit research institute RTI International.
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New York - Area Man Copes as Longtime Group Home Suspended Amid Staffing Crisis
By Mallory Diefenbach, Bavaria Daily News, January 31, 2022
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Matthew Duboy had lived at the Koscieiniak IRA group home on Handley Street for 15 years.
For 15 years he had a routine.
That was until Nov. 30 when his parents Karen and Dave Duboy received a call from the Finger Lakes Developmental Disabilities Service Office in Leicester that the Koscieiniak IRA was being closed.
The state Office for People With Developmental Disabilities, which oversees the group homes, says Koscieiniak is suspended as the agency continues to deal with staffing shortages. The suspension, meant Matthew and the other 10 residents would be moved to the nearby Perry IRA in 11 days.
“(Matthew) is a very routine kid,” Karen said. “Trying to get him established in (Perry IRA) has taken a lot of extra work on everybody.”
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Matthew didn’t know he would be moving. His mother said there was no way to prepare her son for it; Matthew doesn’t have the cognitive skills to understand, which makes maintaining a routine vital.
The changes – and challenges – have not been limited to the Koscieiniak and Perry IRA homes. Closures and combining of residences has become and increasingly common occurrence across the state.
The state reduced the OPWDD workforce by about 15 percent from 2009 to 2020. The direct care staff have been working double, triple and even quadruple shifts during COVID. Group homes started to close in 2020 with the vast majority in 2021. In the GLOW region, eight group homes have closed or been temporarily suspended since 2019, with seven of them happening in 2021.
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What's Happening in Your State?
Whenever you happen upon an article that we may have missed that pertains to people with I/DD, severe autism, intermediate care facilities, sheltered workshops, or other stories that may be of interest to our families, please send it to us!
We can't promise to use everything that is submitted (we often pare down our list stories each week from 15-30 stories down to a half dozen or so), but we will try to add them to the newsletter or our Facebook page as we see appropriate.
If you do come across any articles of interest, please send a short email with a link to the story to us at info@vor.net
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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.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:
S. 3417 - T he Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.
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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Direct Support Professionals:
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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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What's Happening In Your Community?
Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?
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836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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