VOR invites you to join us for our 2^nd nationwide Networking Zoom Meeting!

Please RSVP us at [email protected] by February 20, if you would like to attend. We will send the zoom link a few days before the meeting.

To register for the event, or if you have any questions or suggestions for future topics, please contact us at [email protected]

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."

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.

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. 

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.

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.

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.

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.

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 [email protected]

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 - The 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.

Contact us at [email protected]