October 27, 2023

VOR's Weekly News Update

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for families of people with I/DD and autism.

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An opportunity to speak out in favor of 14(c) programs from the U. S Department of Labor:

DOL - Additional Section 14(c) Stakeholder Engagement Sessions Announced

In addition to last night's session, DOL is offering two more opportunities for families to speak on the importance of providing more options for people with I/DD and autism, rather than reducing the number and variety of services available.


Stakeholder Engagement Session #2:

November 01, 2023, from 2:00 to 3:30 PM ET.

Members of the public wishing to participate must register in advance of the meeting by October 30 Click here to register. 


Stakeholder Engagement Session #3:

November 15, 2023, from 5:30 to 7:00 PM ET.

Members of the public wishing to participate must register in advance of the meeting by November 1. Click here to register

For more information about these sessions, please click here

For more on this, please see the second article in "This Week's News"

Last Night's Session

Last night's session ran nearly two hours. Participants were given 2 minutes to speak about their experience and their views on 14(c) programs.

The first to speak was a representative from Microsoft, who announced that they oppose 14(c) programs, because they believe everyone with I/DD or autism can work for minimum wage or better. They announced that they had opened up over 500 jobs in competitive integrated employment.

Microsoft's statement was allowed to run nearly 5 minutes, The two minute time limit was imposed after their representative delivered their prepared statement. This was, once again, a grim reminder that powerful organizations hold much larger influence over policy than do individuals or families of people with IDD and autism.

Our friend Kit Brewer, a provider of 14(c) services and VP of the Coalition for the Preservation of Employment Choice, later spoke, thanking Microsoft for opening up 500 competitive jobs, but countered that providers in the State of Missouri have provided employment to over 5,000 people who prefer to work in sheltered workshops under 14(c).

VOR's Dawn Kovakovich spoke of her daughter's growth over her adult life that is a direct result of her engagement in sheltered workshop. She also told the attendees that the best explanation for the need of 14(c) programs can be found in Chapter 4 of Amy Lutz; book, "Chasing the Intact Mind".

Several self-advocates spoke of their feelings that people with I/DD or autism working for less than minimum wage was hurtful or degrading to them personally (that is, to the self-advocate, not the person who is working in the environment of their choosing). A representative from Diability Rights Kansas also spoke against sheltered workshops.

Hugo Dwyer of VOR spoke of the difficult choices that families are forced to make throughout their lives to ensure what is best for their loved ones with I/DD and autism. These choices vary, depending on the individual in question and the options available, and how members of the disability community should work together and support each other's choices, even if those are not the choices they have made. We should support each other, empathize with each other's challenges, and respect the choices that each of us make.

It is vitally important that VOR members sign up to speak at these meetings. Every voice in favor of 14(c) programs is needed, to help preserve these opportunities for those families who benefit from them.

VOR's Fall Legislative Initiative

Last week, we began a new initiative, emailing Congressional Staffers about more of the issues that our further imbalance the DD system and marginalize those with the most severe intellectual and developmental disabilities and autism.

VOR has always supported the rights of people with ID/A and their families to have the right to make their own informed choices as to the care and socialization they want. We also support maintaining and investing in a full range of residential services and employment opportunities for our loved ones.

Through that lens, we have focused on a few bills that affect our families. The issues we are covering concern the critical shortage of Direct Support Professionals and the attempts to eliminate sheltered workshops and 14(c) employment opportunities.

So far, we have sent out emails to about 300 of the 500+ congressional offices. We have met by Zoom with about 50 offices. The initiative, originally slated for one week in October, will continue throughout November.

For more information on our Fall Legislative Campaign,

please see our website at www.vor.net.

This Week's News:

Once again, Senator Bob Casey (D-PA) has introduced a bill that supports only people receiving long-term services and supports through HCBS programs, ignoring those with the most severe disabilities who reside in Intermediate Care Facilities. If enacted Senator Casey's bill would further imbalance the DD System. We have repeatedly spoken with his staff about our concerns, but they proceed as planned with full knowledge of the damage they will do by favoring some people while marginalizing others.

Representative Debbie Dingell (D-MI) is expected to introduce a companion bill in the House next week.

Senators Seek Emergency Funding To Ensure Access To Disability Services

By Michelle Diament, Disability Scoop, October 26, 2023

With staffing shortages threatening the availability of Medicaid home and community-based services for people with disabilities across the country, federal lawmakers are looking to boost funding.

A group of 18 Democrats in the U.S. Senate introduced a bill this week that would provide extra dollars for disability services for two years.

The legislation known as the Home and Community-Based Services, or HCBS, Relief Act would temporarily offer states a 10-point increase in their federal Medicaid match, money that could be used to increase pay or benefits for direct support professionals, fund recruitment efforts, support family caregivers or reduce waiting lists for services, among other things, according to Sen. Bob Casey, D-Pa., the measure’s lead sponsor.

“A vast majority of seniors and people with disabilities would prefer to receive care at home or in their communities,” Casey said. “Unfortunately, because of our nation’s caregiving crisis, home and community-based care has become increasingly difficult to access. By stabilizing and investing in the caregiving workforce, we can better provide seniors and people with disabilities with a real and significant choice to receive care in the setting of their choosing.”

Currently, disability service providers are leaning on extra funding from the American Rescue Plan, a $1.9 trillion pandemic relief package signed in 2021, which many have used to pay for wage increases,

bonuses, sign-on incentives and professional development, according to Elise Aguilar, director of federal relations at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation. That funding, however, is set to expire in March 2025 and the new proposed bill would essentially extend that lifeline.

“The temporary funding provided through the American Rescue Plan was incredibly helpful in allowing providers to invest in their workforce, but with the expiration of that funding, providers cannot sustain those efforts,” Aguilar said. “We are hopeful that an extension of this critical funding will help providers continue to invest in stabilizing the workforce.”

Advocates have been pushing Congress for years to address the growing crisis in the disability services sector with long-term funding increases, but so far such efforts have faltered. Meanwhile, a 2022 survey of providers across the country found that 70% could not fill vacancies for direct care positions. As a result, 63% said they had discontinued some programs and services while 83% indicated that they were turning away new referrals.


Labor Department Weighs Future Of Subminimum Wage For Workers With Disabilities

By Michelle Diament, Disability Scoop, October 23, 2023

With big changes under consideration, federal officials want to hear from workers with disabilities about their experiences with a program that allows employers to pay them less than minimum wage.

The U.S. Department of Labor is launching a “series of stakeholder engagement sessions” as it embarks on a “comprehensive review” of what’s known as the Section 14(c) program.

The program, authorized under a law that dates back to the 1930s, allows businesses to receive special 14(c) certificates from the Labor Department permitting them to pay workers with disabilities less than the federal minimum of $7.25 per hour.

Federal officials have been under pressure in recent years to do away with the subminimum wage employment model, which can leave workers with disabilities earning as little as pennies per hour.

Late last month, the agency indicated that it would initiate a review of the program, a move requested by disability advocates, the Government Accountability Office, the National Council on Disability, the U.S. Commission on Civil Rights and the Labor Department’s Advisory Committee on Increasing Competitive Integrated Employment, among others, according to Taryn M. Williams, assistant secretary of labor for disability employment policy.

The Labor Department has not detailed exactly what the review will involve, how long it will take or what the outcome may be, but with the first listening session scheduled this week, the agency is signaling that work is underway.

“During the session, we welcome your input on important areas of focus for reviewing the 14(c) program, experiences with options for competitive integrated employment (CIE), lessons from states that have expanded CIE and/or prohibited subminimum wages, impacts of potentially ceasing to issue 14(c) certificates in the future, and any related issues,” the Labor Department said. “The department is interested in hearing the experiences of workers with disabilities, so we encourage worker advocates to include these examples in their remarks or to invite workers with disabilities to come share their stories directly.”


New Illinois Bill Could Put Workers with Disabilities Out Of A Job

Fox 32 News, October 25, 2023

Lawmakers spoke out Wednesday about legislation that is pending in the Illinois House of Representatives. The legislation would put workers with disabilities out of work throughout the state. 

Republican state representative Charlie Meier and Democrat Katie Stuart say House Bill 793 would put at least 50 percent of workers with intellectual and developmental disabilities and service providers out of work.

If the legislation is passed, critics say the bill will not help providers cover the extra costs.

Read the full article and view the video here

North Carolina - Summit for Adults with Intellectual and Developmental Disabilities held in Chapel Hill  

By Kylie Marsh, The Local Reporter, NC, October 25, 2023

Carol Conway’s son often can’t sleep through the night, is non-verbal, and needs 24/7 care. He is also 36 years old. He was born with Kleefstra syndrome, a rare genetic condition, and is one of the many adults in North Carolina with either a developmental or intellectual disability.

Conway is chair of Parent Advocates for Adult Children with I/DD (an intellectual or developmental disability), a grassroots group of families with adult and young children with genetic conditions like cerebral palsy, Down syndrome, and autism.

“It started as a small group of parents worried about housing for their children,” Conway said. “We’re baby boomers, and we’re the first generation that didn’t institutionalize our children.” But as these parents continue to age, they worry about the social infrastructure available to their children.

Conway’s son currently lives at an intermediate care facility (ICF), where he has access to programming, peers and direct support professionals (DSPs) who can give him the care he requires. However, this is not the norm. Conway says there is a crisis of adequate care, housing, and employment opportunities for adults with I/DD in the state of North Carolina.

Last Saturday, she and other families across the state met for a summit with state representative Zack Hawkins, The Arc of North Carolina, the North Carolina Council on Developmental Disabilities, the North Carolina Department of Health and Human Services, Hope North Carolina, and Disability Rights North Carolina to discuss the growing crisis of finding care for adults with I/DD.

Finding care professionals who can assist adults with I/DD in their homes or living facilities is challenging. In North Carolina, adults with I/DD are eligible for government-funded vouchers called Innovation Waivers that are distributed through North Carolina Medicaid. The state legislature added 350 spots for waivers in the state’s budget last year. Over 2,000 people in the state have Innovation Waivers. There are currently over 17,000 on the waiting list, which can take anywhere from 10-15 years to clear.

In addition to the worker shortage, Conway says pay for DSPs (Direct Support Professionals) is “abysmal,” leaving little to no incentive for professionals to choose it as a career path. and that no new care facility has been licensed in two decades. This year, an additional $6.50 per hour was appropriated in the budget to pay DSPs, but Conway called this a small gesture.

“There is real frustration with the state legislature,” she said. “We feel most of them don’t get it. The representatives in the State House and Senate are living in particularly rural, isolated areas with sparse populations, where they don’t really see or come in contact with people with I/DD that often.”

“Real expertise comes in understanding the individuals,” she said.


South Carolina - State Investigation Reveals Shortcomings in Department of Disability and Special Needs

By Catie Bussmann, FoxCarolina, October 25, 2023

South Carolina’s Legislative Audit Council (LAC) recently published the second part of their investigation into the state’s Department of Disabilities and Special Needs (DDSN). The report revealed failures in handling cases of suspected abuse and neglect, building issues at multiple regional centers, and wait times of several years for people needing specific services.

Members of the South Carolina General Assembly requested the LAC conduct an audit of the department to determine if DDSN was adequately serving consumers, protecting consumers from abuse, and if there needed to be changes to the agency’s structure, among other things.

The latest report published in October revealed multiple issues in the department’s handling of abuse cases. The LAC found the department does not have an adequate system to make sure employees who were fired for abuse, neglect, or exploitation were not later rehired. In fact, the LAC found multiple cases where a previously fired employee was later rehired. In those cases, the official reason for the employee leaving was listed as a “personal” reason and not a termination. Additionally, the LAC noted the need for an adult abuse registry in previous audits of DDSN, one of which occurred in 2008.

Forty-nine percent of HR files of employees did not have documentation of background checks, and 39 percent of the files did not have proof a check of the sex offender registry was done. Sixteen percent of the files had no documentation of required drug tests.

Additionally, the report found that, in 2021, staff at DDSN’s regional centers failed to report suspected incidents of abuse within 24 hours. In one instance, a case of abuse was not reported until 82 days after occurred, after staff reviewed video as part of a separate investigation.

The LAC’s report stressed the importance of surveillance video in cases of abuse, but the report found 70 percent of investigations did not have any video evidence, and there is no policy for where cameras should be in the regional centers.

The report also found executive staff members prevented video surveillance from being viewed in a timely manner by telling risk management employees they had no right to view the video. The department has a video retention policy of 60 days. The report noted this retention policy meant DDSN was not providing video evidence to state investigators in several investigations into possible abuse. When the LAC requested to review a random sample of surveillance video, the department released video including corrupted files and not within the requested time period.

Random on-site inspections at DDSN’s regional centers revealed broken ceiling tiles, peeling paint, and a courtyard covered in algae. The LAC reviewed the budget requests for the department, and found it did not request any funds for consumer equipment upgrades.

The report also found multiple issues in how DDSN handles appeals for eligibility determinations. From 2019 to 2021, the department did not overturn a single decision based on an appeal. The department also did not respond within the required time to 35 percent of appeals.


Related article:

Abuse and Neglect Fostered by Poor Hiring at SC Disabilities Agency, Critical Report Finds

By Javon L. Harris, The State, October 27, 2023

Read the article here

Alaska - Opinion: Medicaid Cuts Threaten the Broader Economy

By Donna Mears, Anchorage Daily News, October 25, 2023

As government pandemic programs wind down, tens of thousands of Alaskans have lost Medicaid health insurance as the Alaska Department of Health has struggled to adjust to new federal program requirements. Losing medical coverage can have devastating consequences for an individual, but these disenrollments also hurt the broader Alaskan economy. We could be plunged into recession by the annual loss of billions of federal dollars and associated economic activity if trends continue in Alaska’s Medicaid program.

Emergency measures

During the early months of the pandemic, as layoffs mounted and people needed help, the federal government took emergency action to change rules for some benefit programs, including Medicaid, to help state governments keep up with the waves of new applicants pouring in. One of those changes was to reduce eligibility rechecks for existing beneficiaries, allowing them to remain enrolled indefinitely through the pandemic. Beginning last year, pandemic health emergency authorities expired, and now all 50 states must confirm everyone’s eligibility, basically by having everybody reapply.

With more than one in three Alaskans enrolled at the start of this year, the Medicaid program represents an enormous injection of federal money into our economy every year. The state paid out roughly $2.2 billion in Medicaid benefits in 2022, of which $1.7 billion came from the federal government. Including economic activity associated with that spending, Medicaid directly generates nearly $4.5 billion in GDP, 7% of the statewide total. If we cut our Medicaid population by more than 50%, as we are currently on pace to do, Alaskan GDP could shrink by nearly 4% — that’s a recession right there.

A path forward

If this situation sounds familiar, it is. A backlog in application processing plagued SNAP (Supplemental Nutrition Assistance Program) recipients over the last year, at one time reducing program enrollment by 70%. From public schooling to public defenders to environmental permitting, so many government services in Alaska are too underfunded to provide for the needs of Alaskans or the business community we depend on. That lack of funding restrains Alaska’s business climate and hampers Alaska’s ability to pull in federal dollars that stimulate the economy. Over time this will weaken our health care and education systems and cripple our ability to meet our state’s full economic potential.

The costs I’ve described make it clear: we need a new approach to our economy—one that starts with adequately staffing agencies like DPA so that employees don’t burn out, paying our public servants competitive wages, and reinstating strong pensions for public employees.

These measures won’t come cheap, but I can’t think of better investments to get our economy back on track.

Read the full article here

Change Care Standards for Intellectually Disabled People with Cancer, Says Reisman

By Julie Parry, Yale School of Medicine, October 25, 2023

For about 25 years, Anna Reisman, MD, has been practicing medicine, caring for patients as an internist.

Still, Reisman, professor of medicine (general medicine), couldn’t have imagined how difficult it would be for her family to make care decisions for her younger sister Deborah, who was intellectually disabled, nonverbal, and autistic. Deborah was diagnosed with breast cancer in her mid-40’s and died at 46.

Reisman and her family worked with the medical team to determine the best treatment options. They agonized over the decisions.

“I understood the complexities of each treatment option and why each would be incredibly difficult,” explained Reisman. “My other sister wanted Deborah to have every treatment. My family looked to me for guidance, but my medical training hadn’t provided me with any specific approaches to working with people with intellectual disabilities and cancer.”

In her new, hauntingly beautiful Perspective piece in the New England Journal of Medicine, Reisman shares the diagnostic and treatment challenges for her sister, along with her insights on “what has to change in health care.”

Reisman believes much can be learned from pediatrics.

“Many hospitals have a full team of professionals to help children with cancer – for example, pediatric oncology social workers and child-life specialists. Having a similarly multidisciplinary team to meet the complex needs of adults with intellectual disability could be really helpful,” said Reisman. “There is a lot of room for improvement.”

Reisman focused her essay on the difficult treatment decision process that has stuck with her over the years.

“In the moment, it felt like we chose the right approach. But then with time, I started to wonder why this population is so ignored. Why is our system not designed to take into account the needs of people that are intellectually disabled and nonverbal?”

Reisman praises her sister’s care team but wonders if the situation could have been managed better.

“My sister's doctors were wonderful. They cared about her and listened to our concerns. But what if we had access to specialists with expertise in navigating these particular situations? Would things have turned out differently? I don't know the answer to that.”


An Excerpt from Anna Reisman's Article "Standard of Care"

By Anna Reisman, New England Journal of Medicine, October 21, 2023

A staff member at my sister’s group home noticed the swelling in Deborah’s breast. She was giving her a bath. She phoned Deborah’s doctor, who came to the house.

The breast exam was not easy. Deborah, then in her early 40s, was intellectually disabled, nonverbal, and autistic. She shied away from touch. But this particular doctor had experience caring for intellectually disabled adults, so she allowed Deborah to lead. If Deborah wanted to walk, they walked. If she wanted to stop, they stopped. In this way, Deborah let her examine her breast a little here, a little there, a few seconds at a time.

It was cancer. When I spoke to my family, I focused on the positives. Deborah was lucky in many ways. She was relatively healthy. She had health insurance. She had access to excellent medical care, with a top cancer center nearby. She had doctors in the family — my husband and me — who would find the best specialists and help weigh the options. She had people who loved her and would gladly help her through this ordeal, including wonderful caregivers in her group home.

Then came the day we sat in a basement office with Deborah’s oncologist and breast surgeon to review the options. Everyone, the doctors included, seemed flummoxed. It was becoming distressingly clear that the standard of care — if it were to be responsive to Deborah’s needs — was simply out of reach.

The surgery Deborah needed was a radical mastectomy with lymph node dissection, which would require her to tolerate the presence of long plastic surgical drains, with the ends stitched under her chest-wall skin, for 2 weeks. Deborah liked to fiddle with things, and she might tug at the drains until they loosened or came out. If she felt pain or discomfort? It was hard to fathom how her caregivers would attend to symptoms that she didn’t have the capacity to describe.

Radiation sounded inconvenient but feasible: several weeks’ worth of daily drives to a radiation facility. Getting Deborah to these appointments would be no problem. But after she arrived? How could she understand that she had to lie completely still while the radiation was administered? She’d undergone minor medical procedures under light sedation. Here, she’d need daily general anesthesia to ensure complete immobilization. Each day: anesthetized, intubated, irradiated, extubated, woken up, and driven home. Even a compressed radiation schedule would have meant spending weeks sedated or groggy.

Chemotherapy seemed particularly cruel. Tolerating an IV would be difficult: someone would have to hold her arm while she resisted the painful needle and then MacGyver a contraption of gauze and wraps to keep the IV and its potentially toxic contents safe from a searching hand. A port? She would surely tinker with it and try to wiggle it free. And how could she understand that whatever misery ensued — nausea, vomiting, fatigue, mouth sores, numb or painful hands and feet — was something she had to endure in order to get well? How could she grasp that it was part of the treatment, covered by the informed consent that she was incapable of understanding?

Even if we could come up with a plan that incorporated all these treatments, a cure was unlikely. Yet we couldn’t imagine not trying. My other sister advocated for the standard of care, whatever it took. Eventually, we arrived at a compromise. We opted for what seemed the most humane option: a less extensive version of the surgery, with no chemotherapy or radiation. The surgeon would remove as much as she could, but not enough to necessitate surgical drains.

It seemed like the right choice. Deborah recovered and was soon back to her delightful self. And then, 4 or 5 months later, the cancer came back. Maybe it would have anyway. Or maybe it returned because we had cut corners.

Neither breast cancer nor intellectual disability is rare. According to the American Cancer Society’s 2023 Cancer Facts & Figures, an estimated 297,790 women in the United States will receive a new diagnosis of invasive breast cancer this year. With intellectual disabilities affecting roughly 1% of the U.S. population, that means that each year there must be at least a few thousand people with intellectual disability facing a new breast cancer diagnosis, plus many more thousands of family members and caregivers struggling to figure out the best option for their loved one.

In addition to being stigmatized and vulnerable, with an average life expectancy of about 20 years less than that of the general population in the United States,1 people with intellectual or developmental disabilities are undercounted in U.S. public health surveillance and underrepresented in medical research.2 And so, when treatment decisions have to be made, there is often little or no guidance from the medical literature. The upshot from a 20-year review of articles on cancer treatment and decision making for people with intellectual disabilities captures this reality, as well as my family’s experience: in a nutshell, less intensive treatments, despite a lack of evidence to support this approach.

The invisibility of patients with intellectual disabilities is not just a problem in research. A search for “intellectual and developmental disability” in the major cancer-treatment guidelines — those from the National Cancer Institute and the National Comprehensive Cancer Network — came up virtually empty.

Here’s what I believe has to change in health care. Most broadly, we need more inclusive research that will chip away at the lack of equity in cancer treatment and ultimately lead to a systematic approach in the intellectually disabled population. Leading cancer experts and writers of guidelines and consensus statements can make this population more visible simply by acknowledging its existence.

The paucity of current evidence doesn’t mean that health care professionals need to work in the dark. Providing and promoting resources for identifying effective workarounds in screening, diagnosis, and treatment could include crowdsourcing to harness the wisdom and experience of clinicians, family members, caregivers, and patients. One excellent resource for physicians is themednet.org, a moderated and peer-reviewed forum for doctors with difficult questions about cancer-related conundrums.

For patients and families, we need more health care professionals with experience caring for intellectually disabled people. In some hospitals, oncology social workers and nurses who specialize in working with patients with intellectual disabilities serve as advocates, problem solvers, and supporters. Still, that’s not enough: all health care personnel should receive training in addressing the health needs of this population.

To read the full article, click here. It requires filling out a form with the New England Journal of Medicine to receive up to 2 free articles per month. No payment required.

Building Bridges: Collaboration Across the Autism Community

by Samantha Easter, and Amy S.F. Lutz, Spectrum, October 24, 2023

Much attention has been paid recently to conflict within the autism community, between autistic adults and parents of profoundly autistic children — from a piece in Nature in May to a Spectrum article on the topic in January to a 2021 post on the “Today Show” blog about the “war” between these stakeholders.

Though it’s true that interactions across this fault line, particularly on social media platforms, can be extraordinarily hostile, it has been our experience — as an autistic adult and the parent of a profoundly autistic 24-year-old son, respectively — that the real world looks different. Many autistic adults and parents are dismayed by contentious online discourse and want to collaborate, and we know there are people in both “camps” who are invested in improving the lives of everyone in the community.


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VOR Bill Watch:

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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. 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.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.

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.


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.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 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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