April 21, 2023

VOR's Calendar of Upcoming Events:

VOR's Annual Legislative Initiative

Briefing Session - Sunday, May 7, 2023

3 - 5 pm Eastern / 2 - 4 pm Central / 1 - 3 pm Mountain / Noon - 2 pm Pacific

On ZOOM

Registration is open!

Our focus this year will be on

Promoting Safety for People with I/DD and Autism

Preventing Abuse and Neglect

and

Supporting our Direct Support Professionals

The meeting for our 2023 Legislative Initiative will take place on Sunday afternoon, on Zoom.

We ask that you register prior to the initiative, and that your membership is up to date.

We will supply the legislative materials in advance of the Sunday meeting, and we will supply you with contact information so that you may set up with your elected officials for the week(s) that follow.

You must be a current member or VOR to participate in this event.

We encourage members to pre-arrange meetings with your

Congressional Staffers

during the weeks of

May 8 - 12 & May 15 - 19

(We will provide you with contact information for the offices of your Members of Congress after you register for the Initiative)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please visit us at www.vor.net

for further information,

to register or become a sponsor,

To download our conference materials

There will be a meeting of the

President's Committee for 

People with Intellectual Disabilities

(PCPID)

on

May 1, 2023

Noon - 5:00 pm ET

on Zoom

We encourage our members to attend, and to identify their names as being members of VOR, both in the Zoom window and in the chat.

We need to make our presence known.

The PCPID, though ostensibly an independent entity, has been overseen & facilitated by the Administration for Community Living.

If we do not show up, our loved ones will not have a seat at the table. 

For more information, 

Click Here

To register for the meeting,

Click Here

Kentucky - Governor Signs House Bill 334, Increasing the Number of Beds in Intermediate Care Facilities

Signed on 3/22/2023, HB 334 requires the Inspector General to amend the state health plan to increase the number of beds by an intermediate care facility for individuals with an intellectual disability.

Read the bill here

A recent illness and stay in a local hospital’s Critical Care Unit (CCU) served as a stark reminder of how my vulnerability was linked to the excellent health care workers and various professionals at a local hospital.

Direct Care Workers (DCWs) often experience not only economic insecurity and vulnerability, but also poor physical, mental, and emotional health due to the demands of their jobs and burnout. The Iowans they serve can become vulnerable when access is hindered by workforce shortages and lack of resources.

The Public Assistance Program Integrity Bill SF 494, which is on its way to Gov. Kim Reynolds’ desk, will create new restrictions on food assistance and Medicaid eligibility It is also a workforce bill that will have unintended consequences on the existing direct care worker shortage, turnover, and Iowans’ access to care. Access is already seriously compromised, increasing the vulnerability of both the workforce and the Iowans who rely on them.

We at Iowa CareGivers don’t pretend to have a vast understanding of Medicaid and its various formulas, but we do have more than 30 years’ experience working with and supporting DCWs. Our role is to put a face on many of those who receive SNAP benefits, Medicaid, and other supports that enable them to work.

DCWs have more than 30 titles such as Home Care Aides (HCAs), Personal Care Assistants (PCAs), Direct Support Professionals (DSPs), and Hospice Aides.

DCWs provide 70-90 percent of the direct hands-on essential care and support to Iowans of all ages and abilities.

DCWs work in the homes of individuals served, assisted living and residential care facilities, nursing homes, hospitals, group homes, hospices, hospitals, non-medical senior services, and other settings.

As of February 2023, Iowa Workforce Development (IWD) reported 1,645 job vacancies for DCWs in Iowa, second only to licensed nurses.

In 2019 Iowa CareGivers partnered with IWD on a statewide Direct Care Worker Wage and Benefit survey. It was a departure from its usual surveys for only employers, and instead surveyed DCWs. The DCW survey provided a unique and complementary perspective to the employer survey.

Findings relevant to proposed legislation:

• 17 percent of direct care workers were receiving SNAP benefits.
• 28 percent were working two jobs.
• 23 percent received health care coverage through Medicaid.
• 54 had children on HAWK-I health insurance.
• 2019 Median hourly wage for Home Health Aides was $15.63; Certified Nurse Aides earned $13.80 and Personal Care Aides $13.34.
• IWD 2021 Labor Market Information (LMI) reported a median hourly wage for Certified Nurse Aides, $14.42, and Home Health Aides/Personal Care Aides, $13.89.

DCWs’ wages haven’t budged much since 2019 which is difficult to understand given the high demand.

Factor in an 8.7 percent Cost of Living Adjustment (COLA) for 2023. We believe even more DCWs are now relying on SNAP and other assistance enabling them to work.

This is not the profile of individuals who are trying to rip off the system, but rather the picture of hardworking individuals, already economically, emotionally, physically, and mentally vulnerable. Deemed “heroes” during the pandemic, the last thing these vital workers need is the burden and fear of losing the very supports that make it possible for them to work.

Read the full article here

Iowa - Advocates Rally at Capitol for More Provider Pay 

By Mark Moran, Public News Service, April 18, 2023

With key deadlines approaching at the Iowa statehouse, advocates are calling on lawmakers to provide better wages for direct service professionals, the health care workers who support people with disabilities in the community.

At an average of about $14 an hour, the pay is poor and the work notoriously challenging, which makes it hard for providers to attract and retain workers in the field.

Mona Kenyon, CEO of Iowa City-based Systems Unlimited, a health care provider, they are 98% Medicaid funded, so companies like hers are calling on the state for higher reimbursement rates.

"People have other opportunities," Kenyon acknowledged. "We don't get the applications. We don't keep staff. It's a constant revolving door. So we're pushing to draw awareness and to say this is a real problem. "

Currently, 96% of provider agencies in Iowa have vacancies for direct service professionals.

Kenyon pointed out companies like hers often compete for workers with fast food restaurants because of the low pay, but noted the work providers do is valuable for people with disabilities and helps them stay in their homes.

To attract and retain more direct service professionals, Iowa's lawmakers are considering House File 264, which would eliminate the state income tax for in-home health care providers, saving them up to $1,300 a year.   

Read the full article here               

Georgia - State Agency to Recommend Pay Hike for Caregivers who aid Georgians with Disabilities   

By Jill Nolin, GPB News, April 14, 2023

A key state agency will recommend a slightly higher wage increase for caregivers who work with people with disabilities in Georgia and who would see a $6 hourly rate increase under the proposal.

The state Department of Behavioral Health and Developmental Disabilities is wrapping up a review of what it pays its service providers, who employ workers known as direct-support professionals.

An earlier version of the study’s conclusions received pushback from providers and advocates when it initially settled on $15.18 for these workers. That was nearly a $5-per-hour increase from today’s $10.63, but short of what providers said they need to compete in an age when retailers and fast-food restaurants are offering similar pay.

The study’s findings were revised to recommend $16.70, which is about $2 lower than the rate pushed by providers who say some locations are at risk of closing their doors.

Still, the change is a “meaningful tweak,” said Diane Wilush, president and CEO of United Cerebral Palsy of Georgia and a board member with Service Providers Association for Developmental Disabilities.

“It’s not where we want to be at the finish line but it’s really meaningful, and we’re grateful for that,” Wilush said Thursday.

The study is just the first of a two-phase process since the review alone does not increase provider rates.  

It is up to Gov. Brian Kemp and lawmakers to decide whether to move forward with the recommendations and fund them in the state budget.

It would cost about $107 million annually to follow the study’s lead, representing a 44% increase. The federal government will also match the state with more than $200 million in new funding.

The state Department of Community Health must also formally request approval from the federal government. It’s a time-consuming process that likely would not result in more money in workers’ paychecks until sometime next year.

Continued

New York - She’s Fighting Cancer but Has To Move since NYS Closed her Group Home

By Berkeley Brean, WHEC News 10, April 17, 2023

A handful of state-run group homes in the Finger Lakes are closing and now people who rely so much on stability have about two months before they move.

In the 1970’s there was a terrible accident in Henrietta. A car hit a 12-year-old girl and caused massive brain damage. She was raised by her parents and sister. She’s lived in her state group home for six years. She was diagnosed with cancer four months ago. Now she’s got to move because there’s not enough people to take care of her.

“This is Tammy,” Susan Fountaine said showing a photo of her sister.

Fountaine showed me her favorite pictures of her sister Tammy. Tammy lives in a group home in Newark, Wayne County, but the state called Susan to say they’re suspending the home.

“And I was confused as to what that meant and they basically told me it’s closing,” Fountaine said.

Berkeley Brean: “So she was diagnosed with cancer just before Christmas?”

Susan Fountaine: “Uh huh.”

Brean: “She’s going through cancer treatment?”

Susan: “Yes.”

Brean: “And now she’s got to move?”

Susan: “She’s got to move. She’s not going to have any of the staff that’s with her.”

Fountaine believe’s her sister’s move date is June 14. She’s afraid to tell her while she’s getting radiation treatment.

Read the full article here

Texas - ‘Feel Like They’re Forgotten’: Push for Higher Pay for Caregivers of People with Disabilities  

By Avery Travis, KXAN Investigates, April 20, 2023

Glen Bradley’s son, Todd, had cancerous tumor and a stroke as a baby, leaving him with brain damage, loss of vision and some issues with fine motor skills. Todd was just three months old when the father learned his son would need around-the-clock supervision for the rest of his life.

“You have to start preparing and making plans for what that’s going to look like when they’re older,” Bradley said.

That planning paid off when Todd was accepted into a state program offering long-term care services in the Dallas area. Now, as an adult, Todd receives these “Home and Community-Based Services,” or HCS, while living in a group home with a few other men.

Bradley said it allows Todd a level of freedom he might not have otherwise, while still getting all the care he needs.

“We had started talking to Todd early on about that,” Bradley remembers. “We had said, you know, ‘His sisters are going to graduate from school, go to college, and then they’re going to go out on their own. And Todd, you’re going to get out of school, and you’re going to go out on your own, as well.’”

He described the caregivers in his son’s group home as “amazing,” helping with daily tasks such as bathing and feeding. However, in the last few years, the Bradley family has noticed more staff turnover and — at times — a shortage of caregivers in his home. 

“He develops relationships with his caretakers, and then they’re gone,” he said.

It’s why Bradley made the three-hour drive to Austin to testify before state lawmakers about the need for better retention methods for these kinds of caregivers.

“I don’t think he could ever imagine that he would lose his home,” Bradley said. “But now I realize how fragile and how tenuous the situation is that he’s in — and other people in those homes — because without those frontline workers there to take care of them, I mean, you can’t provide a home.”

Continued

VOR's 40th Anniversary Annual Meeting

June 11, 2023 - 11:30 am - 5:30 pm (Eastern)

Our Annual Members Meeting (again, on Zoom) will take place on the afternoon or Sunday, June 11th. The schedule is yet to be determined, but the program will include a "State of the Union" speeches from our President, Joanne St. Amand, our Treasurer, Larry Innis, and our Executive Director, Hugo Dwyer, as well as reports from our various committee chairs on their work through the past year.

This Year's Speakers:

Congressman Glenn Grothman - (R-WI)

Representative Charlie Meier (Illinois General Assembly)

Amy S. F. Lutz, PhD.

Speakers and times for this event are subject to change

And, as we do every year, we will have a special networking meeting for our members to submit reports on what is going in their states, so that we can share our problems, solutions, strengths, and hope.

This event is open to all. Registration will open in Mid-Late May

Milder Autism Is Rising Far Faster Than the More Severe Type, Study Says

By Mike Stobbe, Associated Press via Time Magazine, April 19, 2023

As autism diagnoses become increasingly common, health officials have wondered how many U.S. kids have relatively mild symptoms and how many have more serious symptoms, such as very low IQ and inability to speak.

A first-of-its-kind study released Wednesday shows the rate of such “profound” autism is rising, though far slower than milder autism cases.

“It’s very important to know how many people have profound autism so that we can properly prepare for their needs,” including more health and education services, said Alison Singer, executive director of the advocacy and research group Autism Science Foundation.

Singer—the mother of a 25-year-old woman with profound autism—was a co-author of the paper, which was published by the journal Public Health Reports. Scientists at the Centers for Disease Control and Prevention led the research.

Though autism has been diagnosed for at least 80 years, the new study is the first to put a number on the share of U.S. children who have the most severe version of it. It comes less than two years after an international commission of autism experts established a definition of profound autism: children with an IQ of 50 or less, and/or kids who can’t communicate through speaking.

Under that definition, about a quarter of U.S. children identified as having autism by age 8 fall into the profound category, the new study found. It means more than 110,000 elementary school-age children in the U.S. have profound autism.

Continued

The Need for Evidence-Based Interventions in Autism

Why is the Autism Society of America highlighting facilitated communication?    

By Amy S.F. Lutz, Psychology Today, April 14, 2023

On April 2, the Autism Society of America (ASA) featured a speller in their mass mailing celebrating “Autism Acceptance Day.” While many people with varying disabilities type as their primary method of communication, the reliance on another person holding a letter board—as seen in one of the images and a video posted on YouTube—marks this interaction as a clear example of facilitated communication (FC).

FC is an intervention that was debunked in the 1990s when dozens of controlled studies demonstrated that the output of the communication was unconsciously controlled by the facilitator, not the disabled person. ASA was an early supporter of FC when it was introduced to the United States in 1989.

I understand why ASA was fooled then—everyone was. FC tapped into one of the deepest hopes of parents of profoundly autistic children, as well as the providers drawn to work with them: that they aren’t really cognitively impaired. That all the things that most people consider important elements of a good life—meaningful work; romantic relationships; engagement with the world through travel, literature, history, and political discourse—won’t be denied them after all.

As the parent of a 24-year-old, profoundly autistic son, I get it. There is nothing I've ever wanted more than for that to be true about Jonah.

And at first, there was little reason not to believe. There was no research suggesting otherwise, and it seemed so unlikely—as FC users began producing poetry and even treatises on disability—that a light touch on the hand, wrist, or shoulder was sufficient to direct such sophisticated messages.

It wasn’t until kids started accusing their parents, through FC, of sexually abusing them that a judge asked the question that should have been asked from the very beginning: How do we know this is real?

A Scientific Consensus Emerges

These cases finally catalyzed a thorough investigation into authorship in FC, which is actually very easy to test—all it involves is asking users to produce information unknown to their facilitators. And what every study found was that not a single FC user was able to do this.

One review summarized that, out of 19 controlled studies done before 1999, there were zero successful trials out of almost two hundred. Zero. In response, many practitioners and users of the current FC iterations Rapid Prompting Method (RPM) and Spelling to Communicate (S2C) have refused to participate in controlled studies—even while their founders, Soma Mukhopadhyay and Elizabeth Vosseller, claim success rates of 100 percent.

Continued

‘Shocking’ Number Of Kids With Autism Kicked Out Of Day Care, Study Finds

By Shaun Heasley, Disability Scoop, April 17, 2023

About 1 in 6 children with autism have been asked to leave a child care or preschool setting, new research finds, and the experience has long-lasting consequences.

In a study looking at more than 200 kids with autism ages 4 to 7, parents reported that 16% had been expelled before reaching elementary school, most often for behavior issues.

“It’s shocking,” said Jan Blacher, a professor at the University of California, Riverside and the University of California, Los Angeles who led the study published recently in the journal Exceptional Children.

“These little kids were asked to leave school because they demonstrated behaviors directly related to their autism. So, they were being expelled from preschool for the very problems that they needed school for.”

Children were a little over age 3, on average, when they were kicked out of their child care program, the study found. The expulsions were more common in private versus public programs.

The researchers noted that many of the children who were turned away from school had not been identified as having a disability.

“That suggests to us that it never occurred to the teachers to refer them for assessment,” Blacher said. “So, part of it is a lack of teacher awareness of the prevalence of autism, and how it manifests in a very young age. Had they understood autism, they might have been inspired to deal with it, and say, ‘Maybe I should have this child assessed.'”

Continued

People With Down Syndrome Are Living Longer, but the Health System Still Treats Many as Kids

By Tony Leys, KFF Health News, April 17, 2023

The young woman, known as Sammee, had become unusually sad and lethargic after falling in the shower and hitting her head. She lost her limited ability to speak, stopped laughing, and no longer wanted to leave the house.

General-practice doctors and a neurologist said such mental deterioration was typical for a person with Down syndrome entering adulthood, recalled her mother, Marilyn Lesmeister. They said nothing could be done.

The family didn’t buy it.

Marilyn researched online and learned the University of Kansas Health System has a special medical clinic for adults with Down syndrome. Most other Down syndrome programs nationwide focus on children, even though many people with the condition now live into middle age and often develop health problems typically associated with seniors. And most of the clinics that focus on adults are in urban areas, making access difficult for many rural patients.

The clinic Marilyn found is in Kansas City, Kansas, 80 miles northwest of the family’s cattle farm in central Missouri. She made an appointment for her daughter and drove up. The program’s leader, nurse practitioner Moya Peterson, carefully examined Sammee Lesmeister and ordered more tests.

With the help of a second neurologist, Peterson determined Sammee Lesmeister had suffered a traumatic brain injury when she hit her head. Since that diagnosis about nine years ago, she has regained much of her strength and spirit with the help of therapy and steady support.

Without Peterson’s insight and encouragement, the family likely would have given up on Sammee’s recovery. “She probably would have continued to wither within herself,” her mother said. “I think she would have been a stay-at-home person and a recluse.”

The Lesmeisters wish Peterson’s program wasn’t such a rarity. A directory published by the Global Down Syndrome Foundation lists just 15 medical programs nationwide that are housed outside of children’s hospitals and that accept Down syndrome patients who are 30 or older.

The United States had about three times as many adults with the condition by 2016 as it did in 1970. That’s mainly because children born with it are no longer denied lifesaving care, including surgeries to correct birth defects.

Adults with Down syndrome often develop chronic health problems, such as severe sleep apnea, digestive disorders, thyroid conditions, and obesity. Many develop Alzheimer’s disease in middle age. Researchers suspect this is related to extra copies of genes that cause overproduction of proteins, which build up in the brain.

Read the full story here

Cassidy, Cardin, Blackburn Push for Better Access to Surgical Oral Health Care for Medicare Patients with Special Needs

Press Release from the Office of Senator Bill Cassidy, M.D. April 19, 2023

U.S. Senators Bill Cassidy, M.D. (R-LA), Ben Cardin (D-MD), Marsha Blackburn (R-TN), and five Senate colleagues urged the Centers for Medicare and Medicaid (CMS) to increase access to dental surgical facilities for Medicare recipients, especially those with disabilities. The senators pressed the agency to include a recently established code for dental surgical services on the list of ambulatory surgical center (ASC) covered procedures. 

“[W]e encourage CMS to support access to needed dental surgical procedures by expanding operating room sites and urge CMS to allow the new Medicare dental code and its valuation to also be included within the ASC covered procedures list for all clinically appropriate procedures,” wrote the senators.

If left untreated, early childhood tooth decay and bone loss can result in emergency department visits and life-threatening infection and hospital admission. In adults with special needs and disabilities, dental infection can greatly compromise other medical conditions resulting in emergency care. Dental patient wait times for operating room access can be as long as six-months or more. Change is needed to ensure that children and adults with special needs, disabilities, and chronic health conditions are not forced to unnecessarily wait to receive treatment in a safe setting that can fully meet their needs. 

Cassidy, Cardin, and Blackburn were joined by U.S. Senators Debbie Stabenow (D-MI), Steve Daines (R-MT), Lisa Murkowski (R-AK), Mike Braun (R-IN), and J.D. Vance (R-OH). The American Academy of Pediatric Dentistry and the Ambulatory Surgical Center Association have endorsed the changes.

Continue here to read the letter

 Click here  to download

Millions Expected to Lose Dental Care Coverage after Medicaid Review

By Phil McCausland, NBC News, April 14, 2023

More than 14 million adults across the United States who receive Medicaid are at risk of losing dental health coverage now that the Covid public health emergency is over, according to data exclusively obtained by NBC News. 

The public health emergency ended April 1, allowing states to review Medicaid recipients’ eligibility and disenroll them from the program for the first time since the beginning of the pandemic. Around 15.7 million people are expected to lose health coverage as a result. The emergency declaration did not allow states to remove enrollees from the program during the pandemic, which caused programs to expand precipitously over the past three years. 

An issue that few have identified, however, is that about 14.2 million people, or 28% of adults currently enrolled in Medicaid, will also lose their dental health coverage, according to the data compiled by CareQuest Institute for Oral Health, a think tank dedicated to oral health in the country. 

The five states facing the biggest drop in coverage are Hawaii, Wyoming, Indiana, Florida and Illinois. There are six states that don't offer dental coverage as part of their Medicaid plans: Alabama, Delaware, Maine, Maryland, Tennessee and Texas. It is expected to be a huge effort for state agencies to contend with the redetermination of people's Medicaid eligibility.

Continued

Study: Mortality in People with Intellectual Disabilities Extended Beyond Deaths from COVID Itself

Provided by European Society of Clinical Microbiology and Infectious Diseases, via Medical XPress, April 17, 2023             

New research presented at this year's European Congress of Clinical Microbiology & Infectious Diseases (Copenhagen, April 15–18) and published in The Lancet Public Health shows that the impact of COVID-19 on mortality in people living with intellectual disabilities extended beyond deaths from the virus itself, and was linked with increased mortality in several other conditions. The study is by Dr. Maarten Cuypers, Radboud University Medical Center, Nijmegen, the Netherlands, and colleagues.

Although high rates of COVID-19-related deaths have been reported for people with intellectual disabilities during the first two years of the pandemic, it is unknown to what extent the pandemic has impacted existing mortality disparities for people with intellectual disabilities.

This population-based cohort study used a pre-existing cohort that included the entire Dutch adult population (everyone aged ≥18 years) on Jan 1, 2015, and identified people with presumed intellectual disabilities through data linkage. For all individuals within the cohort who died up to and including Dec 31, 2021, mortality data were obtained from the Dutch mortality register.

Therefore, for each individual in the cohort, information was available about demographics (sex and date of birth), indicators of intellectual disability, if any, based on chronic care and (social) services use, and in case of death, the date and underlying cause of death. The authors compared the first two years of the COVID-19 pandemic (2020 and 2021) with the pre-pandemic period (2015–19). The primary outcomes in this study were all-cause and cause-specific mortality. They calculated rates of death and generated hazard ratios (HRs) using statistical modeling.

At the start of follow-up in 2015, 187,149 Dutch adults with indicators of intellectual disability were enrolled and 12.6 million adults from the general population were included. Mortality from COVID-19 was five times higher in the population with intellectual disabilities than in the general population, with a particularly large disparity at younger ages (22 times higher below 30 years of age, and still nine times higher below 60 years of age) that declined with increasing age.

The overall mortality from all causes disparity during the COVID-19 pandemic (HR 3.38 times higher) was 5% higher (than before the pandemic (3.23 times higher), This increased overall mortality disparity was not completely explained by the excess risk for people with intellectual disabilities to die from COVID-19, but increasing mortality disparities were also seen for causes related to cancer, mental, behavioral and nervous system disorders, and external causes. Thus, although people with intellectual disabilities were already facing a pre-existing mortality disparity, the magnitude of this risk difference relative to the general population increased during the pandemic. 

Continued

Click here to go to The Lancet's report

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

VOR SUPPORTS:

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) - TTo amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with 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.

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.

VOR OPPOSES:

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.

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.

VOR supports increasing funding for people with I/DD, but we have concerns that this bill, in its 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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Direct Support Professionals!

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Planned Giving

As we approach the mid-April tax season, we ask that our members consider making a donation to VOR as a way to ease your tax burden while supporting our mission to advocate for individuals with I/DD and autism.

• For information on various forms of planned giving, including making a charitable contribution using the Required Minimum Distribution from your IRA, making gifts of securities, or making legacy contributions through your life insurance policy, please click here.

• For information on the lasting impact of a will bequest, please click here.

As always, we suggest you consult with your policy administrators and tax professionals to determine how best to contribute.

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