February 16, 2024

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

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Save The Dates!

MAY 6 - 9, 2024

Back to Capitol Hill!

We plan to assemble in D.C. on Monday, May 6th and schedule meetings with Congressional Staffers, Committee Staffers, and Federal Agencies on

May 7th and 8th, and possibly on May 9th, depending on their availability.


VOR Time Capsule - A lost video made by VOR families in 1999 on the importance of ICFs

One of our long-standing VOR members recently sent a video made in 1999, showing the need for intermediate care facilities in a full continuum of care. Many of the people in this video are no longer with us. Many of their loved ones are no longer with us, either. Indeed, the facility at which this was filmed, the North Virginia Training Center, is no longer with us. It was closed by the State of Virginia in 2017 as a result of an action by the Department of Justice.

A new title and disclaimer have been added to the video, explaining that we no longer use the "R" word in reference to people with I/DD, nor do we use it in VOR's name. But aside from all of that, the truth that these families share with us remains the same.

Click here to view this VOR Time Capsule

Our Lead Story:

Intellectually Disabled Oklahomans Seek Support from Lawmakers

By Jeff Elkins, The Journal Record, February 13, 2024

Oklahoma adults with intellectual disabilities, their families and caretakers gathered at the Capitol on Tuesday to speak with lawmakers and advocate for additional support.

Ahead of their trip, at least 125 Oklahomans donned orange T-shirts created through vocational programming at an Enid intermediate care facility that was funded through the legislature two years ago. ICFs are designed to ensure that those with disabilities have access to 24/7 care, socialization and programs that help them develop independence and experience fulfillment.

The shirts read “worth every penny” on the front. That’s the message Consuela Dolezal, longterm care administrator at Oklahoma Homes for the Developmentally Disabled, hopes she left with legislators Tuesday afternoon.

Lawmakers have allocated considerable investments in recent years to community-based services provided by Developmental Disability Services at the Oklahoma Department of Human Services, including $32.5 million to eliminate a waitlist that has some with disabilities waiting more than a decade to receive the services.

ICFs are funded through Medicaid, which allocates approximately $51,000 per resident annually. Dolezal said unlike DDS, ICFs have no waitlist, but they’re being reimbursed below the cost of the comprehensive care they provide.

Disabled Oklahomans, their loved ones and advocates are asking legislators to further invest in the lives of those who live at ICFs. Dolezal submits cost reports in October at the end of the fiscal year that go into effect 18 months later. She said she saw a 26% increase in food costs in the first quarter of last year. Inflation has made budgeting a stressful task.

“You have to look at wages, you have to look at everything you’re doing. You definitely don’t want to cut anything that benefits the residents. You can’t cut food because we have to eat, so what do you cut?” Dolezal said. “Our basic ask is the Centers for Medicaid and Medicare Services doesn’t make up for the next year of inflation that you see in real time, and 112% helps make up that gap.”

According to a pamphlet provided by Care Providers Oklahoma, the increase would cost the state approximately $4 million more than the OHCA’s current year budget request.

Nearly 14 years ago, Michelle DeVault moved her son Bobby into the Billings Fairchild Center, an ICF in north Oklahoma that provides 24-hour care for individuals with special needs.

“That’s probably the best thing I’ve ever done besides getting married,” DeVault said, prefacing her concern that ICFs could use more funding. She also said ICFs have a high turnover rate and regulations that complicate certain care processes. She hopes legislation passed this year will address those issues, but said despite room for improvement, the level of care her son and other residents receive in Billings is comprehensive.

Steven Buck, president and CEO of Care Providers Oklahoma said it’s important to provide resources for ICFs because they help those with intellectual disabilities live a fulfilling life.

Buck said state Rep. Marilyn Stark, R-Bethany, is working on House Bill 3101. This bill would create a Longterm Care Facility Advisory Council with a dedicated seat for an operator or administrator of an ICF. 

Read the full article here

National News:

Following up on last week's news:

Congress Weighs Strengthening Health Care Protections For People With Disabilities

By Michelle Diament, Disability Scoop, February 12, 2024

The U.S. House of Representatives voted to bar Medicaid and other federal programs from considering a quality-of-life measure that could be used to discriminate against people with disabilities, but the bill’s future remains unclear.

The legislation known as the Protecting Health Care for All Patients Act passed on a party-line vote of 211 to 208 last week.

The bill would prohibit federal health programs from using a metric called Quality-Adjusted Life Years, or QALYs, that factors whether treatment is cost-effective enough to justify.

“QALYs aggregate quality and quantity of life simply by lowering the value of a year of treatment by the degree to which an illness, disability, or other health condition is perceived to harm the person’s quality of life during that year,” according to a 2019 National Council on Disability report, which found evidence that QALYs could be used to discriminate against people with disabilities and recommended that the government take steps to rein in their use.

Existing law already bans Medicare from using QALYs, but the current bill would expand that to all federal programs including Medicaid.

“QALYs and other similar discriminatory measures assign a dollar value on the life of a patient to decide if a certain treatment is cost-effective, oftentimes discounting an individual’s worth and need for care solely because of their disability or chronic illness,” said Rep. Cathy McMorris Rodgers, R-Wash., the bill’s sponsor, on the House floor. “Measurements like QALYs remove the consideration of unique circumstances and health conditions of a patient and their doctor’s judgment from deciding what’s best for the patient.”

But, Democrats on Capitol Hill and The White House are lining up against the legislation warning that it would undercut existing protections in the law and be paid for by taking away money from important public health programs.

“Federal law, including the Inflation Reduction Act, already prohibits Medicare from using QALYs in its coverage determination, and state Medicaid programs are required by law to cover all drugs,” said Rep. Frank Pallone, D-N.J. on the House floor. “Instead, H.R. 485 goes further than current law and opens a back door that will be used to bar the use of any value measures by the federal government and these measures are used by federal agencies such as the Centers for Medicare and Medicaid Services and the Department of Veterans Affairs and by states to negotiate fair prices for prescription drugs.”

Pallone said he sought to include an amendment clarifying that the bill could not be used to undermine the federal government’s efforts to lower prescription drug prices, but the proposal was voted down by Republicans.

Read the full article here

Number of At-Risk Youth with Intellectual Disability and Autism in the U.S. Foster Care System is Growing

New research estimates nearly 40,000 youth with autism and intellectual and developmental disabilities were in the U.S. foster care system in 2016. 

Drexel University News, February 12, 2024

Youth with foster care involvement have an increased risk for mental health diagnoses, trauma and worse outcomes in adulthood than their peers. Research about how youth with disabilities, including autism and intellectual disability, interact with this system is lacking. Evidence for how youth with autism or intellectual disability in the foster care system access and use services is needed to advance ways to improve their outcomes.

Recently published in the Journal of the American Medical Association (JAMA) Pediatrics, researchers at Drexel University’s A.J. Drexel Autism Institute, in collaboration with George Mason University’s Department of Social Work and the University of North Carolina at Chapel Hill’s School of Social Work, engaged an intersectional analysis to examine foster care involvement among youth with intellectual and developmental disabilities (including autism) and how it has evolved in the United States using a cross-section of 2016 national Medicaid claims data.

In 2016, there were over 430,000 youth in the U.S. foster care system. The researchers found that the population of youth with intellectual and developmental disabilities in foster care had grown substantially to almost 40,000 – or nearly 9% – and the rates of autism and intellectual disability among youth in foster care were two to five times greater than the rates found in the general U.S. population.

Among youth with intellectual and developmental disabilities, Black youth and female youth had a higher risk for foster care involvement compared to youth who were white or male. Risk for foster care involvement among youth with intellectual and developmental disabilities also increased with age.

“Understanding the involvement of youth with intellectual and developmental disabilities in the foster care system is an important first step in identifying priorities for needed policy and program change,” said Lindsay Shea, DrPH, associate professor and director of the Policy and Analytics Center at the Autism Institute, and lead author on this study. “Our collaborative team of public health, policy and social work experts sought to understand this group in the Medicaid system.”

The research team used the largest sources of Medicaid claims data to examine the entirety of the U.S. Medicaid system. Studying youth with intellectual and developmental disabilities in the foster care system in Medicaid is timely and important because Medicaid is the predominant insurer for youth with intellectual and developmental disabilities and youth in the foster care system. However, there may be barriers to how states connect services for youth with intellectual and developmental disabilities to the foster care system.

“This research centers around the experiences of an extremely vulnerable, and often invisible foster care youth. The first step to supporting these youth, is ensuring that their experiences are visible,” said Amy Blank Wilson, PhD, associate professor at the University of North Carolina at Chapel Hill and co-author of the study.   

Research focused on autism is often limited to barriers in reaching marginalized groups, in part due to competing demands for families and individuals. The use of secondary data sources, such as Medicaid claims, presents an innovative opportunity to observe the experiences of people enrolled in the Medicaid system. In turn, this research presents news ways that policies or programs in Medicaid might be reorganized or connected, including bolstering supports for youth with intellectual and developmental disabilities in the foster care system. 

Read the full article here

Read the report from JAMA here

The Shifting Sands for State Medicaid Programs Lurking In Our Data

By Drew Altman, KFF News, February 12, 2024

By far the biggest thing about the great Medicaid unwinding of 2023 is the number of low-income people who have been disenrolled, and we have been tracking that relentlessly at KFF. More than 16 million people have been disenrolled so far, as continuous Medicaid coverage provided during the pandemic ended, based on the most current data from all 50 states and the District of Columbia. 

But there is another story in the data that goes with the unwinding that has mostly escaped notice. We are seeing a decline in federal Medicaid funding as fiscal relief to states in the form of higher matching funds is withdrawn, and an increase in state Medicaid spending, despite lower enrollment. And it’s happening when revenues in most states are weakening. That can be expected to put pressure on state budgets, rekindle on again off again conflict in states about the share of the budget consumed by Medicaid, and make it tougher for states to continue current efforts to strengthen their Medicaid programs.

A few numbers:

  • The Congressional Budget Office projects that states will receive $58 billion less in federal Medicaid outlays in FY 2024 than they did in 2023. As a consequence, states report that their Medicaid spending will increase by 17.2% in FY 2024.

  • State revenue collections have started to slow down or decline, and some states may have to face budget gaps in the coming years. States have recently experienced an overall 2% decline in inflation adjusted revenues.

  • Most of the state numbers are estimates and projections. They are often the product both of best estimates and political calculus, but over the years, they’ve generally been in the ballpark.

  • States are spending to address rising costs in Medicaid and health care, but also long overdue needs, such as increasing some providers payment rates or putting more resources into home and community-based services or mental health and behavioral health services. States like California and North Carolina are making big plays to address the social determinants of health outcomes for targeted populations. These are some of, if not the most innovative programs in health care.

Medicaid will face blowback in state budget wars in many states as it eats up a larger share of the new funds available in state budgets that legislatures, cabinet agencies, and governors will want to direct to other priorities. 

Read the full article here

The Argument Over a Long-Standing Autism Intervention

Applied Behavior Analysis therapy has a troubling history, and even many supporters say it was used too widely in the past. But has criticism of the practice gone too far?

By Jessica Winter, The New Yorker, February 12, 2024

A.B.A. is the only autism intervention that is approved by insurers and Medicaid in all fifty states. The practice is widely recommended for autistic kids who exhibit dangerous behaviors, such as self-injury or aggression toward others, or who need to acquire basic skills, such as dressing themselves or going to the bathroom. The mother of a boy with severe autism in New York City told me that her son’s current goals in A.B.A. include tolerating the shower for incrementally longer intervals, redirecting the urge to pull on other people’s hair, and using a speech tablet to say no. Another kid might be working on more complex language skills by drilling with flash cards or honing his ability to focus on academic work. Often, A.B.A. targets autistic traits that may be socially stigmatizing but are harmless unto themselves, such as fidgeting, avoiding eye contact, or stereotypic behaviors commonly known as stimming—rocking, hand-flapping, and so forth.

In recent years, A.B.A. has come under increasingly vehement criticism from members of the neurodiversity movement, who believe that it cruelly pathologizes autistic behavior. They say that its rewards for compliance are dehumanizing; some compare A.B.A. to conversion therapy. Social-media posts condemning the practice often carry the hashtag #ABAIsAbuse. The message that A.B.A. sends is that “your instinctual way of being is incorrect,” Zoe Gross, the director of advocacy at the nonprofit Autistic Self Advocacy Network, told me. “The goals of A.B.A. therapy—from its inception, but still through today—tend to focus on teaching autistic people to behave like non-autistic people.” But others say this criticism obscures the good work that A.B.A. can do. Alicia Allgood, a board-certified behavior analyst who co-runs an A.B.A. agency in New York City, and who is herself autistic, told me, “The autistic community is up in arms. There is a very vocal part of the autistic population that is saying that A.B.A. is harmful or aversive or has potentially caused trauma.”

Until recently, the American Medical Association officially endorsed “evidence-based treatment of Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy.” Last summer, the medical students’ body of the association proposed that the organization withdraw its support for A.B.A., citing objections by autistic self-advocates. The association did not adopt the resolution as submitted, but its house of delegates eventually approved an amendment removing any explicit reference to A.B.A., and autistic activists spread the word that A.B.A. no longer appeared to have the outright endorsement of the nation’s largest medical society.

Alison Singer, who is the president and co-founder of the Autism Science Foundation, believes that criticism of A.B.A. has gone too far. She told me that her daughter, Jodie, now in her twenties, acquired essential language skills in A.B.A., such as naming the parts of her body. “If she had a toothache, she could say, ‘Tooth hurts,’ rather than screaming or tantruming, with me having no idea that she needed to go to the dentist,” Singer said. Jodie used to have hours-long meltdowns during transitions. “A lot of kids with autism are not able to wait their turn,” Singer told me. “In A.B.A., she learned, over time, that first we will do this, and then we will do this”—for example, first, we’ll practice some new words, and then we can have some free time on the iPad. The intervals between “first” and “then” might begin at just ten seconds, then build up to thirty seconds, then one minute, and so on.

A generation ago, Singer said, “everyone who was diagnosed with autism got A.B.A. That type of one-size-fits-all treatment never really made sense for a child who had intact language or a high I.Q.” Now those children have grown up. “They’re talking about A.B.A. and how negative it was for them. But that doesn’t mean that we should eliminate it for the people who need it.” Singer’s position is, in part, a pragmatic one, but the debate over A.B.A. goes beyond practicalities. It is not simply a matter of whether a particular treatment works but what it means to be autistic, and what all autistic people do, or do not, have in common.

Read the full article here

State News:

New York - People with Disabilities Demand Fund in StateBudget to Permanently Raise Staff Pay

By Kate Lisa, NY State of Politics, February 12, 2024

Senate Disabilities Committee chair John Mannion pushing for more state resources to permanently increase the pay of direct support professionals who work in nonprofit care programs

Workers who care for New Yorkers with disabilities said Monday they no longer want to have the same fiscal battle with state lawmakers over their salaries each year — pushing the Legislature this budget cycle to include a fund to permanently boost wages. 

Hundreds of people with intellectual and developmental disabilities rallied in Albany on Monday to fight for more support for staff who work for nonprofit providers and help the viability of the field.

"We all need to be paid the way we're supposed to be, and we haven't been for a long time," New York Disability Advocates President Mike Alvaro said. "It's time for them to start investing in us. We care for our individuals so our individuals can live their lives the way they're supposed to."

Disability advocates and their caretakers from across the state are fighting for a 3.2% Cost of Living Adjustment increase for staff, up from Hochul's proposed 1.5%. COLA funding helps nonprofits with food, supplies, transportation, maintenance, employee benefits, insurance costs and more.

They also want to create the Direct Support Wage Enhancement or fund to give employees who make under $125,000 annually a $4,000 benefit — increasing pay $2.19 per hour.

"This is not easy work," said Alvaro, who is also the president and CEO of the Cerebral Palsy Associations of New York state. "We all need to be paid the way we're supposed to be."

Nonprofit providers outside New York City make an average wage of $16.48 an hour compared to $24.74 cents for staff in state-operated programs, according to New York Disability Advocates. 

Lawmakers on both sides of the political aisle agree the state needs to make a greater investment in direct support professionals. The key will be to get legislative leaders and Gov. Kathy Hochul on board.

Assemblywoman Aileen Gunther, chair of the Assembly Mental Health committee, said she will be loud in pushing legislative leaders and Hochul to prioritize budget investments in people with disabilities and their care providers.

"They just have to prioritize," Gunther said. "There's a lot of money in this budget and there's enough money to pay these folks. The 3.2% is not much to ask for.

"These are human lives," she added.

At least 85% of people with disabilities in the state receive care from a nonprofit provider. And most nonprofit providers are dealing with an annual staff turnover rate of 30%, with most vacancies in excess of 17%, according to New York Disability Advocates.

The turnover disrupts a person with a disability's quality of care, and quality of life. 

"We need the care, and we need the staff to support us," said Diego Ortiz, a New Yorker with cerebral palsy who traveled to Albany on Monday with CP Unlimited Hudson Valley. "If we need help, and sometimes we don't get that because they come and go. And it's not fair. And it's not right."


Read a related statement from State Senator John Mannion - "Workers who care for New Yorkers with disabilities said Monday they no longer want to have the same fiscal battle with state lawmakers over their salaries each year — pushing the Legislature this budget cycle to include a fund to permanently boost wages."

Virginia - Youngkin’s Plan would Fund Care for Thousands of People with Developmental Disabilities. Even more would still be waiting. 

By Emily Schabacker, Cardinal News, February 7, 2024

It’s been decades since Sue Utterback and her husband have had a break from caregiving.

They’re reasonably fit and financially stable, but because of this, their severely disabled son is not eligible for state-subsidized support services that cover things like respite care or shared housing. 

Without financial support, respite care for a weekend would cost upward of $1,200. Even when the couple considered making the out-of-pocket payment, they couldn’t find anyone to do the job, even though their son doesn’t have any medical needs. 

“It’s been 22 years. I don’t even know what to say anymore to get help,” Utterback said. 

As part of Gov. Glenn Youngkin’s Right Help Right Now plan, a multiyear initiative to overhaul the behavioral health system in the commonwealth, his budget proposal for the next two years includes $300 million to expand Medicaid waivers for developmentally disabled Virginians. 

Commonly called the DD waiver, the program is designed to improve access and affordability for community-based services that help recipients live independently. Community-based services covered under the waiver include home health, skilled nursing, respite care, day services and employment and transportation support. Depending on the recipient’s income, they could be required to pay for a portion of the services, but if they make less than $2,000 a month the services are covered in full by the waiver.  

The governor’s proposed investment would address what’s called the priority one waitlist for people who urgently need services. It would also be the first expansion of the waiver program since it was established in 1991. 

While advocates and parents supported the expansion of DD waiver slots at a public hearing for the proposed budget in January, many said it will not address the access problems for thousands of others and will put increased pressure on providers who are already struggling to meet the current demand. 

There are about 3,440 people who are on the priority one waitlist, meaning their health and safety will likely be at risk in the next year without services, according to the Virginia Department of Behavioral Health and Developmental Services. 

More than 14,000 others are waiting on priority two and three lists with less urgent needs. 

Virginia ranked in the bottom third among all states for services for disabled people in the 2019 Case for Inclusion report, which is produced through a partnership between United Cerebral Palsy and the ANCOR Foundation, a Virginia organization that educates future leaders in disability services. While Virginia has made progress on this front in the last few years, it still has a long way to go. 

When young couples are considering moving to Virginia to start a family, Utterback has one piece of advice for them: "Pick another state."

Read the full article here

Note: Wonkish, but interesting:

California - 2024-25 Budget for the Department of Developmental Services

California Legislative Analyst's Office, February 13, 2024


The Department of Developmental Services (DDS) coordinates a wide variety of services for about 400,000 Californians with intellectual or developmental disabilities or similar conditions. In this brief, we provide background on DDS before describing and assessing the Governor’s 2024‑25 budget proposals for the department. The Governor’s budget proposes a new Master Plan for Developmental Services, as well as budget solutions, including a proposal to delay by one year the implementation of the final phase of service provider rate reform (with the next rate increase occurring July 1, 2025, rather than July 1, 2024).

Recognizing that the state has in recent years undertaken a wide variety of policy initiatives related to DDS, we also address ongoing oversight and implementation issues. In particular, we provide background and issues for legislative consideration on the following three issues: (1) funding directed in statute to direct care staff compensation increases, (2) service provider quality incentive payments, and (3) service disparities and the Coordinated Family Support Services pilot. 

Read the full analysis here

North Carolina - NCDHHS Releases Draft Olmstead Plan, Public Comment Open through March 7

By NCDHHS Press Release, The Richmend Observer, February 15, 2024

he North Carolina Department of Health and Human Services today released a draft of its 2024-25 Olmstead Plan designed to assist people with disabilities to reside in and experience the full benefit of inclusive communities. The plan is open for public comment through March 7, 2024. NCDHHS encourages all interested individuals and organizations to provide comment on the draft plan. The final, two-year plan will be published in April and implemented in calendar years 2024 and 2025.

The Olmstead Plan serves as a blueprint for the way NCDHHS and its state government partners make decisions central to improving the lives of children and families, youth, adults and older adults with disabilities. It reflects the department’s ongoing cross-divisional work to advance independence, integration, inclusion and self-determination for those with disabilities. In alignment with the U.S. Supreme Court’s imperative for community integration in the Olmstead v. L.C. decision, the plan seeks to divert people from entering institutions and support those wishing to leave by offering an array of community-based living services.

“The Olmstead Plan is about empowering individuals with disabilities with the services and supports they need to choose how and where they want to live in their communities,” said NCDHHS Deputy Secretary for Health Equity and Chief Health Equity Officer Debra Farrington. “Our goal is to ensure the right resources at the right time and in the right setting so North Carolinians with disabilities are able to thrive in their daily lives. We appreciate the contributions of our state government and community partners across the state as we work together to realize the promise of the Olmstead ruling.”

NCDHHS has established investing in behavioral health and resilience, as well as choice and inclusion, as key priorities for the department. Since the release of the 2022-23 Olmstead Plan, NCDHHS has secured a historic $835 million investment in behavioral health and home and community-based supports through the 2023 state budget, increased behavioral health Medicaid rates for the first time in ten years, added slots to the Innovations waiver for people with intellectual and other developmental disabilities and invested in the direct service workforce.

The department also continues to build on the foundation of its Transition to Community Living (TCL) and Money Follows the Person programs and expand its work to address social determinants of health at the heart of the Healthy Opportunities initiative. This ongoing work to improve North Carolina’s behavioral health system and home and community-based services will continue to strengthen the well-being of individuals with disabilities and their families across the state.

To submit public comment regarding the draft Olmstead Plan, email the Technical Assistance Collaborative (TAC) at [email protected].  

New Jersey to Spend $6 million to Move People with Disabilities out of Nursing Homes

By Gene Myers, North Jersey . com, February 12, 2024

New Jersey's Division of Developmental Disabilities announced $6 million in funding Wednesday to build and upgrade homes for people with disabilities currently living in nursing homes, said the Department of Human Services, which oversees the DDD.

The initiative will create better living spaces for an estimated 100 people in community settings, the state said. Funding of up to $60,000 per bed, with a maximum of $240,000 for each home, will be available, the announcement said.

A report issued by the advocacy group Disability Rights New Jersey last fall highlighted the plight of hundreds of people with developmental disabilities who are placed in nursing homes lacking adequate oversight and resources.

People with behavioral disorders, cerebral palsy, Down syndrome and other disabilities often end up in these facilities when home care becomes untenable. But advocates criticized the state's failure to properly track and monitor residents in these settings. They called for better regulation and the development of a more effective screening system.

Read the full article here

Dental Care for People with I/DD & Autism:

Recommendations for from a dental hygienist for other dental hygienists - (Good info for families and caregivers, too):

Treatment Accommodations for Dental Patients with Special Needs

By Annie Walters, MSDH, RDH; RDH Mag online; February 14, 2024

In 2019, the National Health Interview Survey (NHIS) identified 7.39 million people in the US who live with an intellectual or developmental disability (IDD), which equates to about 1 in 10 people. These individuals face numerous barriers to daily life, and access to adequate oral health care is one of them.

To provide a personalized level of care to these patients, oral health-care providers must understand the complexities of IDDs and the heightened oral manifestations that can result. Dental hygienists are in a critical position as care providers for these patients due to their role in education and prevention. There are aspects of a dental hygiene visit that can be tailored specifically for special needs individuals. Caregiver education, oral hygiene aids, and dental office considerations also play a role.

Office space considerations and treatment accommodations are critical to ensure an optimal dental appointment for those with specialized health-care needs (SHCN). A SHCN is defined as any physical, developmental, mental, sensory, behavioral, cognitive, or emotional impairment or limiting condition that requires medical management, health-care intervention, or use of specialized services or programs.

A significant gap in health care exists for this patient population, due in part to limited trained providers, challenges with insurance, and lack of resources in some settings to meet the needs of these patients. When looking at how an office can accommodate patients with SHCNs, consider the type of SHCN the patient presents with, whether behavioral, congenital, developmental, or cognitive.

Here are conditions, syndromes, and disorders based on the type of SHCN. This is not a complete list, but briefly identifies patients that may present with specific needs in your office.

Autism spectrum disorder (ASD): This is a developmental disorder that appears within the first three years of life and has different forms with varying severity. The two main symptom areas of ASD are deficits in social communication and interaction, and restricted, repetitive behaviors, interests, or activities.13,15

  • Consult with the person’s caregiver about past dental experiences and tips for interactions that will ensure a positive experience.
  • Have a desensitization appointment with no treatment rendered. The patient will come into the office to become familiar with the space and staff.
  • Work slowly and use “tell-show-do.”
  • Offer a quiet space void of interruptions.

Down syndrome: This is a condition where an individual has an extra copy of chromosome 21, often referred to as Trisomy 21. This results in an intellectual disability and specific physical features. Most patients with Down syndrome can be treated comfortably in a dental office.13,16

  • Schedule their appointments early in the day.
  • Use caution when laying the patient back. Some patients may require extra protection around the spinal cord.
  • Maintain consistency with the same practitioner, operatory, and appointment time if possible.
  • Schedule a desensitization appointment.
  • Provide a quiet space void of interruptions.
  • It may be comforting to the patient if you play music.
  • These patients typically do not tolerate complete or partial dentures.
  • Be mindful if a patient has swallowing or expectorating difficulties.

Intellectual disabilities (IDs): The difference between IDs and developmental disabilities is that developmental disabilities encompass both intellectual and physical disabilities.12 Patients with an ID typically rely on caregivers to assist them with their primary care and may have a hard time communicating their wants and needs.3

  • Maintain consistency with the same practitioner, operatory, and appointment time if possible.
  • Schedule a desensitization appointment.
  • Offer a quiet space void of interruptions.
  • Stay cognizant of items in the operatory that could get knocked over when you’re providing care.
  • Determine who will be providing informed consent.
  • Music may be comforting for these patients.
  • These patients understand visual instructions better than verbal alone.
  • Count during short segments of a procedure to allow the patient to anticipate a break.

Cerebral Palsy (CP): This is a group of disorders that affect a person’s ability to move and maintain balance and posture. The names comes from cerebral, meaning having to do with the brain, and palsy, meaning weakness or problems with using the muscles.13,18

  • Be mindful of swallowing or expectorating difficulties.
  • Use a bite block with floss attached if it can be tolerated.
  • Keep the chin in a downward position.
  • Introduce instruments slowly.
  • Offer a quiet space void of interruptions.
  • Let the patient know before stimulus is introduced.
  • Keep lights, sounds, or sudden movements to a minimum.
  • Stay cognizant of items in the operatory that could get knocked over when you’re providing care.
  • If patients are more comfortable in their wheelchair, lock and recline their chair if possible. Use props to support their head, neck, and back as needed.
  • Some patients with CP use a feeding tube. These patients will be low caries risk, but they accumulate calculus quickly.

Read the full article here

VOR Bill Watch:

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


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.

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.

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.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.


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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