July 26, 2024

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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VOR & You:

From the Federal Register - Request for Comments on Possible Revision of Standard Occupational Classification for Direct Support Professionals for 2028


The Office of Management and Budget (OMB), on behalf of the Standard Occupational Classification Policy Committee (SOCPC), announces the review of the 2018 Standard Occupational Classification (SOC) Manual for potential revisions to be made for 2028 and solicits public comment. This review and possible revision of the 2018 SOC is intended to be completed by the beginning of 2027 and then released to begin use in reference year 2028.


While they did not specifically request information regarding Direct Support Professionals, we hope that our members will speak out in support of recognizing our caregivers and awarding them the classification of Health Care Professionals. Comments are due soon.


For more information, and to submit a comment, please click here.

The 2024 VOR VOICE Award


Those who attended our 2024 Annual Meeting know that Rep. Charlie Meier of Illinois was chosen as the recipient of this year's VOICE Award, for his longtime advocacy for people with I/DD and autism, his recognition of the exceptional needs of people on the severe/profound end of the spectrum, and his stalwart support of the Warren G. Murray Center and of the ICF system for those who rely on this level of care.

One person who didn't know about the award was Rep. Meier himself. The Murray Parents Association made the presentation on behalf of VOR at a get-together on his farm a few nights ago. He was quite surprised and couldn't believe that we had kept this a secret until the ceremony. The award was presented by VOR's Secretary, Rita Winkeler, who is also the President of the MPA.

A New Home for Ursula


As promised in our Annual Meeting last month, we have found a new home for Ursula, the 2024 VOR Bear.


Ursala will now live with VOR's own Ann Knighton and her family in Georgia.


The VOR Bear has been a long-standing tradition for us. We are grateful to our dear Mary Reese for having made so many of these gifts for us over the years.

Christmas in July


We aren' the Hallmark Channel, but we are hoping that the spirit of generosity that is a hallmark of the holiday season will be with us during the month of July.


We rely on your generosity to help us continue to help families like yours to make their own choices about the best paths for their loved ones with I/DD and autism.


We work hard to make sure our voices are heard, by Members of Congress, by those who determine disability policy, by state legislators, and by other families with similar needs, facing similar dilemmas.


We hope you can find it in your heart to give a little this summer, to help us continue our efforts throughout the year. Every little bit counts, and we hope we can count on you.


Thank you!

Please Click Here to Donate

This Week's News:

About Our Newsletter


For as long as I have been a member of this organization, VOR has published a newsletter every Friday in an effort to keep our families informed of news and events that may influence their lives, and the choices they make on behalf of their loved ones with intellectual and developmental disabilities and autism. This is not an easy task. It requires daily monitoring of Google Alerts, following other advocacy organizations to keep up with their activities, reviewing the daily Federal Register, scanning the congressional register to find which bills are introduced that might affect our families, and reading emails from members who share information about their states. Some weeks there are few articles to choose from. Other times there are too many. This week, there were over forty articles that made the list of "possibles". It's often hard to choose which articles state the case most concisely, or with the least bias, or with the latest developments. It can be just as hard to choose which articles not to print, for any number of reasons.


Sometimes, we have to choose whether or not to print a story that paints ICFs or 14(c) programs in a bad light. While we had to print anything detrimental to a full continuum of care or choice of employment opportunities, we feel the purpose of this newsletter is not to provide our members with affirming news they want to read, but to share with our members the stories that cover the issues that concern us, like them or not. Our purpose is to make sure our members are well informed.


The most difficult choices are political. VOR is non-partisan, and we work hard to remain so. But American politics have become deeply divisive. There are stories that come out that favor one side or another. When faced with the choice as to whether or not to print these stories, we have to ask, "Is this news?", "Does it come from a reliable and respected publication?" "Will our members, no matter what their political leanings, benefit from being informed by knowing this is being reported nationally?" and "Would we be remiss in holding back on this story, for fear of losing people from one side or the other?"


Our lead story this week falls squarely into that category. It is one of the most controversial pieces we have ever printed. I have reached out to members on both sides of the aisle about whether or not to print this. And everyone has said to print it, and let our members decide for themselves. The story is about one man's claims of his interactions with a relative who is candidate for president. Some of our members will accept it without question or need for substantiation. Others will feel that this is just another disgruntled family member trying to jump on the conspiracy against their candidate in order to sell a book. We respect our readers enough to know that they will make up their own minds, weigh disability policy with other issues that affect their lives, and vote for the candidate who best matches their values and their hopes for this nation.


Thank you for being members of this great organization.


Hugo

Trump Suggested Some With Disabilities ‘Should Just Die,’ Nephew Says

By Michelle Diament, Disability Scoop, July 25, 2024


In a new book, Donald Trump’s nephew Fred C. Trump III says that the former president told him that people like his son, who has intellectual and developmental disabilities, ‘should just die.’


The claim comes in Fred Trump’s memoir “All in the Family: The Trumps and How We Got to Be This Way” that is set to be released next week. An excerpt was published by Time on Wednesday.


Fred Trump, the son of Donald Trump’s late brother Fred Trump Jr., said that he saw his uncle being in the White House as an opportunity to advocate for housing support and other needs of people with intellectual and developmental disabilities like his son William, 25.


In the book, Fred Trump describes bringing a group of advocates to the White House in May 2020 to meet with top officials including then-U.S. Secretary of Health and Human Services Alex Azar and then-President Donald Trump.


“Donald seemed engaged, especially when several people in our group spoke about the heart-wrenching and expensive efforts they’d made to care for their profoundly disabled family members, who were constantly in and out of the hospital and living with complex arrays of challenges,” Fred Trump wrote.

After the 45-minute Oval Office meeting concluded, Fred Trump said his uncle asked to see him.


“I thought he had been touched by what the doctor and advocates in the meeting had just shared about their journey with their patients and their own family members. But I was wrong,” Fred Trump wrote.


“Those people,” Fred Trump said his uncle told him, “the shape they’re in, all the expenses, maybe those kinds of people should just die.”


Not knowing what to say, Fred Trump said he “turned and walked away.”


On another occasion, Fred Trump said he reached out to his uncle to ask for help with a medical fund that the family had set up for his son that was running low. After explaining the situation, Fred Trump recounts that the former president told him “I don’t know,” then let out a sigh and said, “He doesn’t recognize you. Maybe you should just let him die and move down to Florida.”


Fred Trump said he clarified to his uncle that his son does recognize him. He described feeling hurt, but said that it reinforced his commitment to advocacy and raising awareness about what it’s like to raise a child with disabilities.


“William deserves a life just like anyone else, and to that end, I knew I had to advocate for him in every way possible,” Fred Trump wrote. “I might never change Donald’s mind or change the mind of anyone who lacked love and compassion for those whose voices couldn’t be heard and whose lives were fully dependent on others. But I knew what I could do. I could offer my voice, my experience, and my strength to push forward for those who needed it.”


The Trump campaign did not respond to a request for comment from Disability Scoop about Fred Trump’s claims. Time also said that it asked the former president to respond and received no reply.


Read the full article here



The original article first appeared in Time magazine and was later covered by The New York Times

National report with most extensive data on characteristics of people with IDD reveals insights into state supports

Human Services Research Institute, July 23, 2024


The National Core Indicators (NCI) program announces the release of the 2022-2023 National Core Indicators Intellectual and Developmental Disability (NCI-IDD) - In-Person Survey (IPS) National Report. This comprehensive report offers the most extensive and representative data on the characteristics and outcomes of people with IDD who utilize state-funded services. Collected by 33 states from over 25,000 adults receiving long-term services and supports (LTSS) through their state Developmental Disabilities (DD) service systems, the report provides a crucial overview of demographics and self-reported outcomes among LTSS users in the United States. NCI-IDD strives to drive positive change in human service systems by using valid and reliable tools to collect, analyze, report, and disseminate these data outcomes.


The survey participants come from diverse backgrounds, encompassing race, ethnicity, age, communication preferences, residence types, urbanicity, and more. The report gathers insights on community access and participation, choice and control, relationships, and other important aspects. Here are a few key takeaways:


• Employment: Across the sample, 17% of people were in paid community jobs, and an additional 44% were unemployed but wanted a paid community job.

• Workforce: 40% of people say their staff change or turnover too often.

• Choice and decision-making: 24% of people indicated they chose where they live and 31% indicated they had some input in choosing where they live.


The report highlights several areas where outcomes for people with IDD are relatively promising, such as relationships, service coordination, and workforce. Other areas have mixed results, especially choice and decision-making, community inclusion, and health. Many of these areas also have strong connections to federal policy, such as the HCBS Settings Final Rule and Access Rule, and represent areas for possible quality improvement.


Read the full press release here


To access the full National Core Indicators - Intellectual and Developmental Disability - In-Person Survey National Report 2022-2023, please visit the NCI website at https://idd.nationalcoreindicators.org/survey-reports-insights/. Click on the "Chapters 2022-23" dropdown to retrieve the report.


For a comprehensive overview of the results of the National Core Indicators - Intellectual and Developmental Disability - In-Person Survey National Report 2022-2023, please see the “At-a-Glance” infographic.

Justice Department to Publish Final Rule to Improve Access to Medical Care for People with Disabilities

Press release, DOJ Office of Public Affairs, July 26, 2024


On the 34th anniversary of the Americans with Disabilities Act (ADA), Attorney General Merrick B. Garland signed a final rule under Title II of the ADA to improve access to medical diagnostic equipment (MDE) for people with disabilities. MDE includes equipment like medical examination tables, weight scales, dental chairs, x-ray machines and mammography machines. Accessible MDE is essential for people with disabilities to have equal access to medical care.


The rule clarifies how public entities that use MDE, such as hospitals and health care clinics operated by state or local governments, can meet their obligations to ensure accessibility under the ADA. The department has heard from many individuals with disabilities who have been denied basic, critically important health care services because medical providers lacked accessible MDE. For example, patients with disabilities reported receiving only a cursory physical examination in their wheelchair because they could not be transferred to the examination table for a full examination. Other patients reported forgoing basic preventative health care, such as dental examinations and mammograms, because providers did not have accessible MDE.


The rule adopts a technical standard for accessible MDE. The rule also establishes requirements that will help make accessible examination tables and weight scales more available. This will make it easier for people with disabilities — especially people who use wheelchairs — to receive medical care.


Read the DOJ press release here

Pediatricians Get Guidance On Dental Care For Kids With Developmental Disabilities

By Michelle Diament, Disability Scoop, July 22, 2024


Children with developmental disabilities often struggle to access dental care even though they are at increased risk of tooth decay and other issues. Now, new guidance is detailing what pediatricians should do to help.


In a 20-page clinical report released this week, the American Academy of Pediatrics highlights the unique circumstances facing those with autism, cerebral palsy, intellectual disability, Down syndrome and other developmental disabilities when it comes to oral health.


These individuals “are at increased risk for dental disease because of unique aspects of their medical conditions, the treatments associated with them, or both,” the guidance indicates.


For example, bruxism, or the voluntary or involuntary clenching or grinding of teeth, is common in this population. And, certain factors such as seizures or the use of psychotropic drugs can increase the risk of dental trauma.


The pediatrics group also points out that people with developmental disabilities face extra barriers to accessing care including challenges in finding dental providers prepared to treat them or willing to do so.

The guidance addresses how to manage self-injurious behaviors, the pros and cons of sedation and general anesthesia and also outlines considerations for individuals with adaptive behaviors such as chewing on objects and excessive drooling.


Primary care providers should identify dental professionals who are equipped to care for children and youth with developmental disabilities to refer patients to, the pediatrics group said. Pediatricians are advised to recommend that children have a dental home by age 1 and they should communicate with dental providers about the individual’s intellectual and functional abilities, among other steps.


Read the full article here


Read an in-depth article about this report , and download the report here

State News:

At Louisiana care facilities for disabled, audit finds cases of possible abuse, neglect

By Meghan Friedmann, NOLA, July 22, 2024

A state audit has found there were at least 3,500 incidents of actual or alleged abuse or neglect during a five-year period at care facilities throughout Louisiana that serve people with developmental disabilities.


Roughly one-fourth of those incidents were not reported within 24 hours as required by state regulations, according to a report released Monday by the Louisiana Legislative Auditor. The audit looked at incidents from July 2018 until July 2023.


The audit also found that over one-third of sheriffs’ offices lack access to a statewide system that would help them respond to abuse and neglect allegations.


“We conducted this audit in response to legislative interest, calls from concerned parents, and the vulnerable nature of the population served,” the report says.


In response to the audit, the Louisiana Department of Health, which oversees intermediate care facilities, agreed to make certain changes to improve its monitoring system.


The report offers a peek into abuse allegations at intermediate care facilities that house people with disabilities such as cerebral palsy, autism spectrum disorder and Down syndrome. Such facilities rarely appear in the news.


“Any abuse and neglect among our most vulnerable citizens is not acceptable. This is one of the many challenging issues we inherited, and have been taking seriously since January," LDH Secretary Michael Harrington said in a statement. "The department is working hard to ensure that all residents of our facilities receive safe care.”


The several thousand abuse and neglect allegations come from the facilities themselves, as they are required to self-report such incidents to the LDH.


Because LDH may cite facilities that fail to report such incidents, some facilities tend to over-report, including incidents that would not qualify as abuse or neglect. That practice may inflate the numbers somewhat.


The audit does not break down the abuse allegations by facility. As of 2023, there were approximately 500 care facilities Louisiana, and they served over 4,000 residents, the report says.


Continued

Illinois faces backlash over bid to end oversight of disability services

By Molly Parker and Beth Hundsdorfer, Capitol News, July 22, 2024


As Illinois seeks to end federal court oversight of its disability services, an independent court monitor says the state continues to fall short of promises made 13 years ago to allow people with intellectual and developmental disabilities to live outside of institutions. 


Court hearings are set to begin this week as to whether the state will be released from what’s known as the Ligas consent decree. The consent decree originated from a 2005 lawsuit alleging that Illinois' insufficient funding for community living options led to the segregation of individuals with intellectual and developmental disabilities. Due to the lack of support for living in the community, many were forced to seek care in large, hospital-like facilities. The lawsuit argued this violated a landmark 1999 U.S. Supreme Court decision in a case against Georgia, which mandated states accommodate individuals in the most integrated setting of their choosing. 


In 2011, to settle the Ligas case, the state agreed to undergo a major expansion of its community-based services. And in December, the state filed a motion to vacate the consent decree, accompanied by a lengthy report stating it had exceeded its commitments despite that its system of care is “not and will never be perfect.”


But Ronnie Cohn, the monitor and a New York-based expert on disability services, told the court that too many people still can’t access community-based services in Illinois, especially those in crisis or who have more complex medical and behavioral support needs.


The state’s motion to vacate claimed that, as a result of historic investments, Illinois extended support to thousands more individuals in community group homes and family settings – more than 23,000 in 2023 compared to 13,500 in 2011. It increased pay for frontline workers who help people with daily tasks like eating, bathing and errands. And the state argued it significantly reduced the time people spend waiting for services, especially when they are facing a crisis. 


The state’s motion to vacate claimed that, as a result of historic investments, Illinois extended support to thousands more individuals in community group homes and family settings – more than 23,000 in 2023 compared to 13,500 in 2011. It increased pay for frontline workers who help people with daily tasks like eating, bathing and errands. And the state argued it significantly reduced the time people spend waiting for services, especially when they are facing a crisis.


Read the full article here

New Jersey - Office of the Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families Files Annual Report


Paul Aronsohn, the New Jersey Ombudsman for Individuals with I/DD released a report on the state of the state's services this week.


Even if you are not a resident of New Jersey, we recommend you download and read this report. It is a great example of how a government agency can provide a readable, informative account of their work, and it offers insights into how the Ombudsman's office works to address these issues.


Go to the Ombudsman's page here


Download the report here

Texas - Developmental Disability Services to close after 20 years of serving Waco community  

By Elizabeth Dzina, Fox 44 News, July 23, 2024


After serving the community of Waco for 20 years, Helping Others Take Initiative (HOTI) is closing their doors at the end of August due to lack of funding.


HOTI is a Day Habilitation Facility which gives those diagnosed with a physical disorder opportunities to improve their ability to complete activities of daily living, improve social skills, gain educational experiences and engage in exercise activities.


“Kind of made me angry, but I was in a meeting and I knew it going to close, but I didn’t know when,” says HOTI patient Mel Hocker.


Hocker has been attending HOTI Day Habilitation since 1990.


“I don’t like its closing. This is my home. This is all I know,” says Hocker.


HOTI has helped Hocker find a job, meet new friends and learn new life skills he can take with him once the program closes.


“Thank you for all the staff and what they did for us to get this far. We will miss ya’ll,” says Hocker.

The funding was coming from the state’s appropriations approved by the Texas Legislature for Revenue Dollars.


“We’ve been the biggest provider in the region for 55 years, and we just hate to think that it’s come to this, and we hope that the issues will be resolved,” says CEO of The Heart Of Texas Behavioral Health Network Daniel Thompson. 


Continued

Connecticut - Lamont exploring Medicaid managed care, but many push back  

By Katy Golvava, CT Mirror, July 25, 2024


Gov. Ned Lamont is exploring the possibility of returning the state’s Medicaid program to a model known as managed care, which has garnered a reputation among some Connecticut legislators and advocates for increasing costs and reducing access.


Connecticut currently uses what’s known as a managed fee-for-service model for its Medicaid program, where the state pays providers directly for services delivered to Medicaid beneficiaries. In a traditional “capitated managed care” model, the state instead pays a set monthly fee per member to insurance companies to manage the Medicaid program, and the insurance companies pay providers, offering states an increased level of budget predictability. 


At a July meeting of the Medical Assistance Program Oversight Council, known as MAPOC, the Department of Social Services announced that it’s launching a search for a consultant to conduct a “landscape analysis” of different Medicaid models, including managed care. The announcement, as well as previous discussions about exploring managed care, drew fierce criticism from several committee members. 


David Bednarz, a spokesperson for Lamont, said that policymakers have an obligation to regularly assess current systems that are in place.


“Policymakers have an obligation to the people they represent to regularly conduct reviews that determine whether currently enacted policies are working to their greatest extent and delivering the best value to residents,” wrote Bednarz in an emailed statement. “Gov. Lamont believes state government should be doing everything it can to ensure that Medicaid members are receiving access to high quality, equitable care.”


But the legislators, advocates and health care industry leaders serving on MAPOC overwhelmingly fear that managed care models will not lead to better care for the state’s Medicaid beneficiaries. 


Connecticut used managed care until 2010 but then transitioned to managed fee for service because of “a loss of confidence” in the managed care organizations running the program, including uncertain cost effectiveness and a lack of transparency. Some also see the governor’s interest in managed care as a distraction from increasing Medicaid reimbursement rates, which is widely acknowledged as a critical flaw of the current program.


Continued

Texas - Advocacy groups work to keep people with intellectual disabilities off of death row

By Patrick M. Davis, Texas Standard, Jyly 24, 2024


In a recently filed brief, the Arc of the United States and other groups prod the Texas Court of Criminal Appeals to abide by Supreme Court precedent.


Blaine Milam is an East Texas man who’s on death row for the 2008 beating death of 13-month-old Amora Carson. Milam was scheduled to be executed back in 2021, but a Texas appeals court granted a request to stay his execution; his lawyers argued he displayed significant limitations in intellectual functioning.


Back in 2002, the U.S. Supreme Court barred the execution of people with intellectual disabilities, though it gave states some discretion to decide how to determine such disabilities. Last week, the Arc, a disability rights advocacy group, was among several organizations filing a “friend-of-the-court” brief with the Texas Court of Criminal Appeals.


Shira Wakschlag, legal director for the Arc of the United States, joined the Standard with more.


Texas Standard: Tell us about what this brief is urging the court to do here.

Shira Wakschlag: So the Arc’s advocacy led to the U.S. Supreme Court’s ruling more than 20 years ago that you mentioned that bars the execution of defendants with intellectual disability. But too often, outdated stereotypes and misconceptions are leading to unjust outcomes, particularly in these capital cases.


So the Arc, alongside our partners, are fighting to ensure that courts are relying on clinical standards, as the Supreme Court requires, to ensure that people with intellectual disability are properly identified and protected from execution.


When you say clinical standards, what are the legal standards for making that determination currently? 

So the Supreme Court has barred people with intellectual disability from execution. It’s cruel and unusual punishment under the Eighth Amendment. To determine intellectual disability, there’s a three-prong standard and we talk about this extensively in the brief.


To sum it up, the three prongs are determining significant impairment and intellectual functioning, significant impairment in adaptive functioning and conceptual, social and/or practical skills; and then the third prong is the onset of the disability during the individual’s developmental period.


And so there can be a number of ways to determine each of those pieces. Some of it may come from a doctor’s note. Some of it may come from an IQ score. Some of it may come from records during the developmental period – for example, school records or psychological records.


And so it’s really a comprehensive look at the individual’s overall development and really taking into account each of these three prongs: intellectual, adaptive: and age of onset.


Continued

Controversy Over "Reversing Autism"

Several articles appeared this week, concerning claims about reversing the symptoms of autism.


For brevity, we will link to just two of those articles below. But for a better look behind the idea of "curing austism, we recommend you read a book published last year by our friend Amy S.F. Lutz, "Chasing the Intact Mind", which is available here


Again, we are just trying to show what is being written. We want our readers to be well informed and better able to make their own choices.


Autism can be reversed, scientists discover

By Joe Pinkstone, The Telegraph via Microsoft Start, July 19, 2024


Severe autism can be reversed and symptoms reduced to an indistinguishable level, scientists have discovered.


Two non-identical twin girls in the US were found to have a level of autism at 20 months old that required “very substantial support”.


A groundbreaking trial saw their parents and a team of medical experts create a bespoke two-year programme of interventions designed to help the children thrive and flourish as much as possible.


Scientists say the programme was successful, with both girls undergoing “dramatic improvements” in the severity of their symptoms.


The progress of one of the girls, described only as Twin P, was heralded as “a kind of miracle” by one of the paediatricians. Twin P scored a 43 out of 180 on the Autism Treatment Evaluation Checklist scale in March 2022 and this was reduced to just four by October 2023.


“One of the twins’ symptoms were reversed to the point of being indistinguishable from children who had never had a history of autism symptoms,” Dr Chris D’Adamo, study author from the University of Maryland, told The Telegraph.


“This twin’s functions are comparable to those who never had an autism diagnosis.”

The other girl, known as Twin L, had more severe autism aged 20 months, scoring 76, and this was reduced to 32 a year and a half later.


“[This twin] improved dramatically, but not quite as much,” said Dr D’Adamo.


The scientists do not use the term “cure”, but believe the improvements are unlikely to be undone over time.


“Because autism is a developmental condition, one can safely say that once they have overcome the developmental aspects of autism and returned to a typical developmental trajectory, they are very unlikely to exhibit the common symptoms of autism again,” said Dr D’Adamo.


“Symptoms that could return might be more along the lines of things like anxiety, gastrointestinal issues, sensory issues, but not necessarily the behavioural aspects of autism.”


The twins underwent behavioural analysis, speech therapy and a strict gluten-free diet and nutrition programme as part of the trial to reduce inflammation.


The diet was casein-free, a protein found in milk; low-sugar; had no artificial colours or dyes; zero ultra-processed foods; primarily organic; and locally sourced.


The girls were also given daily supplements for omega-3 fatty acids, multivitamins, vitamin D, carnitine, and others.


Continue reading

National Autistic Society says media reports on an autism cure study are ‘deeply insulting’

By Alison Bloomer, Learning Disability Today, July 22, 2024


The National Autistic Society has slammed a ‘deeply insulting’ new study that was published in the national media this week claiming that autism can be ‘reversed’.


The two-year study involving twin girls in the United States was published in the Journal of Personalized Medicine. It described the reversal of autism symptoms and provided a review of related literature describing associations between modifiable lifestyle factors, environmental exposures, and various clinical approaches to treating autism.


As a part of the study, the twins underwent behavioural analysis and speech therapy. They also stuck to a strict gluten-free diet with zero ultra-processed foods.


It concluded: “The dramatic improvement and reversal of ASD diagnoses among these fraternal twins demonstrates the potential of a comprehensive treatment approach including both conventional therapies (e.g., ABA) and a wide variety of environmental and lifestyle modifications facilitated by a multi-disciplinary team of practitioners addressing the total load of stressors of modern living. The commitment and leadership of well-informed parents or guardians is an essential component of the effective personalization that appears necessary for the feasibility of such improvements. Future prospective studies are warranted to confirm these findings.”


Tim Nicholls, Assistant Director of Policy, Research and Strategy at the National Autistic Society, said that the study was deeply insulting to the more than 700,000 autistic people in the UK.


He added: “We are completely baffled why this has even been published by UK papers. This is a case study of a single set of twins using interventions that are themselves questionable. There are absolutely no conclusions at all that can be drawn from this and to suggest otherwise is just irresponsible journalism. We’ve repeatedly told outlets that we can help decipher shoddy research and avoid misinformation being published.


Continued

VOR Bill Watch:

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


VOR SUPPORTS:



S.4120 / H.R.,7994 - The Long-term Care Workforce Support Act - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Diability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.


S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.


H.R.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental disabilities.


H.R.485- Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.


S.7302 - The Credit for Caregiving Act of 2024 Sen. Michael Bennett (D-CO) This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit is not to exceed $5,000 per year.


H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.


H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.


S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.


H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 


H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.


VOR OPPOSES:


H.R.8109 - To Make Permanent the Money Follows the Person Rebalancing Demonstration Program. MFP has been used to erode the ICF system. We call for congressional hearings, studies by the GAO, and audits by the Congressional Budget Office before any action should be taken to reauthorize this program.


S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.


S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.


S.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.



VOR HAS SIGNIFICANT CONCERNS WITH:


S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.


S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.


S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.



VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.



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