July 19, 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.

Billions Are Spent On IDD Services Annually. Where Does It All Go?

By Shaun Heasley, Disability Scoop, July 16, 2024

The federal government spent $80.6 billion to support people with intellectual and developmental disabilities in 2021 alone. A new report breaks down where it went.

Researchers from the University of Kansas analyzed how funding to support those with developmental disabilities was allocated for the 2021 fiscal year, the most recent year with complete figures. The work is part of the State of the States in Intellectual and Developmental Disabilities project, which has tracked federal funding in this area for more than 40 years.

Spending on the estimated 7.57 million Americans with developmental disabilities went toward everything from supported living to family supports, personal assistance and supported employment, accounting for roughly 0.1% of the government’s $6.8 trillion budget for that year.

The biggest chunk — 87% — went toward services provided through Medicaid, according to the findings, with $73.6 billion dollars dedicated to community living and just $7 billion for institutions. That split has become increasingly pronounced in the decades since the 1980s, the report shows.

The analysis shows that $9.1 billion went to supported living in 2021, while $9 billion was devoted to family support, $4.66 billion to personal assistance and $860 million to supported employment.

Total public spending on supports and services for people with developmental disabilities varied substantially by state, the report found, accounting for less than 1% to as much as 6% of state budgets.

Read the full article here

Click here to download the report

Amid Shortage Of DSPs, Disability Advocates Push For Nationwide Head Count

By Michelle Diament, Disability Scoop, July 19, 2024

The federal government is weighing whether to start tracking the number of direct support professionals, a move advocates call a critical first step in easing the nation’s dire shortage of workers caring for people with developmental disabilities.

The White House Office of Management and Budget is seeking input on potential changes to what’s known as the Standard Occupational Classification Manual, which outlines how federal agencies classify occupations for the purpose of collecting data. Among the options is whether to add “care workers” to the manual and, if so, how this occupation should be named and defined.

As it is, DSPs are often lumped in with home health aides, personal care aides, certified nursing assistants and other job categories that don’t accurately describe their true role. That means that policymakers lack the data needed to address the shortage of workers providing home and community-based services, advocates say.

“A unique DSP occupational code will ensure the U.S. Bureau of Labor Statistics can accurately capture employment and wage data specific to the profession, which will in turn assist federal and state policymakers to inform and impact future policy,” more than two dozen disability advocacy groups wrote in a letter to lawmakers earlier this month. “Accurate and comprehensive data on DSPs is crucial for understanding the workforce crisis and developing effective solutions.”

The request for comment from the Office of Management and Budget comes as Congress is moving forward with legislation that would pressure the budget office to act on the dearth of data on DSPs by adding a Standard Occupational Classification code for these workers. The bill known as the Recognizing the Role of Direct Support Professionals Act unanimously passed the U.S. Senate in March and was approved by a House committee earlier this month.

Read the full article here

Note: VOR has been advocating heavily for the passage of these bills over the past year, and consistently over the past several years in the 116th and 117th Congresses. It looks as though this may pass this year.



Note: The "disability advocacy groups" mentioned in this letter did not ask VOR to sign on to their letter. Many of these groups are opposed to the ICF system, and only want to include DSPs who work in HCBS settings in the OMB reporting.

Massachusetts - Even after affirming abuse, DPPC places care providers in Abuser Registry only 36% of the time

By Dave Kassel, The COFAR Blog, July 16, 2024

When an “Abuser Registry” was authorized in Massachusetts with the enactment of “Nicky’s Law” in 2020, we joined many others in welcoming it as a major step forward in ensuring adequate and safe care for persons with intellectual and developmental disabilities.

Under the law, the names of caregivers against whom abuse and neglect allegations are substantiated are placed in the Abuser Registry — a database that the state and its provider agencies must check before hiring new personnel. Placement of the name of an individual in the Abuser Registry means that person is no longer eligible to work for the Department of Developmental Services (DDS) or for any agency funded by DDS.

Equitable use of the Abuser Registry requires balancing the protection of disabled persons from abuse with due process for accused care providers.

But new data we have received from the Disabled Persons Protection Commission (DPPC) under a Public Records Law request raise a question whether the scales in that balance might be weighted too heavily in favor of the care providers.

The data show that in only 36% of the cases in which DPPC affirmed initial substantiations of abuse allegations against care providers did the agency conclude that those persons’ names should be placed in the Registry.

Continued

Nebraska - Families of children with developmental disabilities to get assistance paying for medical services

By Aaron Bonderson, Nebraska Public Media, July 16, 2024

Nebraska families with a child who has a developmental or intellectual disability will have an easier time paying for medical appointments, under a new regulatory change.

The Nebraska Department of Health and Human Services announced the expansion of a program to provide Medicaid coverage for children with developmental disabilities on Tuesday.

The new growth in the Katie Beckett Program officially took effect at the start of July.

The waiting list for community-based services for people with developmental disabilities, like group homes and day programs, currently stands at six to eight years.

Gov. Jim Pillen announced in April that he would eliminate the waiting list by entering people into services immediately after they become eligible.

“The expansion of Medicaid to families is a positive step forward in Gov. Pillen's plan to eliminate the Developmental Disabilities Waitlist," Tony Green, Director of the DHHS Division on Developmental Disabilities, said in a release. “This expansion will provide greater access to critical Medicaid services for individuals with disabilities."

In June, Nebraska Public Media News reported the Governor’s plan could also eliminate choice of services for people with developmental disabilities.

Children with developmental disabilities who don’t get the coverage or care they need can cause families to go into debt, he said. Sometimes, families spend up to $100,000 in medical bills to help a child with a developmental disability.

But the Katie Beckett Program can patch funding for families who are still waiting for non-medical services like day programs or group homes.

Read the full article here

Read the press release from the State of Nebraska DHHS here

Montana - Out-of-State Agency Replaces Child Development Center           

By Maggie Dresser, Flathead Beacon, July 15, 2024

After 50 years of providing services for youth with developmental disabilities in western Montana, the Child Development Center closed its doors earlier this month as Benchmark Human Services, a for-profit Indiana-based healthcare company, replaced the nonprofit provider.

The Child Development Center ceased providing services on July 1 while Benchmark has started offering “some services,” according to Benchmark officials.

For years, the Child Development Center contracted with the Montana Department of Health and Human Services (DPHHS) as part of the Developmental Disabilities Program (DDP). But this year, the contract was awarded to Benchmark, which received a higher score on the request for proposal (RFP).

Headquartered in Missoula, the Child Development Center served Missoula, Lake, Flathead, Mineral, Ravalli, and Sanders counties and employed 74 staff members, 45 of whom were fulltime employees. Benchmark will employ 10 to 12 staff members even as officials say they are “excited to hire many staff members from (the Child Development Center) to help maintain continuity of care for children and families.”

In an email to the Beacon, Benchmark Human Services Chief Culture Officer Courtney Heiser said the company has an administrative office in Great Falls and is currently looking for space in Missoula. Providers will give care in a home-based environment and services will not be clinic-based as some Child Development Center services were.

Montana is now one of 18 states where Benchmark exists while they offer early intervention programs in Colorado, Connecticut, Missouri and Virginia.

In western Montana, the Child Development Center provided services for roughly 350 kids per month; Heiser said Benchmark was assuming 196 of those clients while the state target was 280.

Read the full article here

Wisconsin - Children with disabilities need better mental health services, 2024 fact sheet finds  

By Abigail Lamoreaux, Racine County Eye, July 17, 2024

Wisconsin’s Office of Children’s Mental Health (OCMH) released a fact sheet this July showing that children with disabilities are more likely to need mental health services than children without.

The fact sheet also covers steps that caregivers, and others, can take to improve the mental health of children with disabilities.

According to a July 16 press release, “One in five kids has a special health care need, whether autism, asthma, diabetes, epilepsy, learning disabilities, speech or language impairments, or intellectual and developmental disabilities.”

Despite the size of this demographic, “These children with the most needs also tend to be the most underserved by our care system,” the press release reads.

Children in this demographic, referred to in the release as children or youth with special health care needs (CYSHCN), are five times more likely than children without these needs to forego proper care, data showed.

Other important numbers include:

• 56% of CYSHCN have a mental health condition
• Nearly 40% of children with ADHD also have anxiety
• Students with disabilities represent 15% of Wisconsin’s student population, but make up 80% of all seclusion cases and 78% of all restraint cases
• 59% of CYSHCN are bullied, and 38% of children and youth without these needs are reported to be bullied
• 62% of CYSHCN have difficulty getting treatment, and 41.5% of children without such needs have the same difficulty

Click here for more information, and to download the fact sheets

As discrimination complaints soar, parents of disabled students wait for help

By Jonaki Mehta, NPR - All Things Considered, July 16, 2024

Sam is a bespectacled 6-year-old with a winning smile and a penchant for dinosaurs, as evidenced by the roaring Tyrannosaurus rex on the back of his favorite shirt.

“He loves anything big, and powerful, and scary,” says his mother, Tabitha. Sam grins mischievously as he puts his hands together in a circle — the American Sign Language word for “ball.” He’s telling Tabitha he wants to start his day in the colorful ball pit in a corner of his playroom in their home in central Georgia.

It’s a precious moment of unstructured fun in the day. Soon, he’ll have a virtual lesson with his new teacher for the deaf and hard of hearing, followed by occupational therapy, and speech and language pathology.

Sam has significant disabilities, including cri du chat syndrome, a rare genetic disorder.

He is partially deaf, so he primarily communicates using American Sign Language, or ASL, and mostly uses a wheelchair to get around.

“Sam has a complex case,” says Tabitha, who is no stranger to disability. She used to be a special education teacher, and three of Sam’s seven siblings also have disabilities.

Having that kind of experience means Tabitha knows what it takes to fight for the rights of her loved ones, including Sam. “I want him to have every avenue open to him. And what I see happening is obstacles placed and limitations set. And that is my worst fear.” That fear led Tabitha and her husband, John, in December 2022, to file a discrimination complaint with the U.S. Department of Education, saying that Sam’s school district has failed to provide him with the services the law says he’s entitled to.

They’re one of a record number of complaints – 19,201 – the department’s Office of Civil Rights, or OCR, received in the last fiscal year. These complaints involve discrimination based on race, color, national origin, age, and sex and disability.

While OCR is a last resort for many parents, the office is overwhelmed with the volume of complaints, and Sam’s case is one of thousands that is lagging in the system.

Since Sam started school, Tabitha and John have struggled to get him the services they say he needs to succeed.

Continued

Report: Charter Schools Are Failing Students With Disabilities

by Beth Hawkins, The 74, via Disability Scoop, July 17, 2024

The authors of new research on how U.S. charter schools are serving children with disabilities say their findings should alarm state education leaders, the agencies that authorize the independent public schools and nonprofit organizations that support them.

On the whole, charter schools do not outperform their district-run counterparts when it comes to providing high-quality special education services, the national nonprofit Center for Learner Equity concluded following a two-year deep dive. Because charter schools exist in part to serve historically underserved students and to develop effective ways of meeting their needs, this failing has a ripple effect on the education of all children with disabilities, the center’s leaders say.

“The origin of the charter sector was to expand opportunities for kids from marginalized demographics,” says Executive Director Lauren Morando Rhim. “With kids of color and low-income kids, the charter sector has done that. But for kids with disabilities, it has not.”

To her, the most disappointing aspect of the research is that it did not yield many examples of success that could illuminate promising practices. “We thought we would turn over rocks and find positive outliers, but really there were very few,” says Morando Rhim. “We hoped to find more states taking action, more authorizers and nonprofits.”

The center organized its report into sections containing recommendations for three distinct groups: states, charter school authorizers, and school improvement and other organizations. Standards for enrolling students with disabilities, serving them and measuring progress should be built in at every stage of a charter school’s life, the researchers say, from the decision to grant it permission to operate to revocation of its charter if it underperforms.

Muddying the picture, they note, is the lack of clear and widely accepted standards for defining success for students with disabilities. They attribute this in part to the requirement that special education services be highly individualized — making uniform academic and social-emotional goals tough to set — and to persistent low expectations regarding children’s potential.

Continued

Struggles to place kids with disabilities in right preschools forces Colorado to change enrollment  

By Erica Breunlin, The Colorado Sun, July 19, 2024

he Colorado Department of Early Childhood has redesigned the way it places preschoolers with disabilities into classrooms that can meet their needs in response to increased scrutiny and a lawsuit filed last year by school districts and education advocacy organizations.

The change to the state’s expanded preschool program — known as universal preschool — follows school districts’ struggles to ensure students with special needs landed in preschool settings that could accommodate the kinds of extra support owed to them under state and federal law. 

School districts say they experienced major hiccups in the program’s inaugural year, when the state’s student enrollment system, called BridgeCare, failed to match all students with disabilities with programs that could give them the targeted instruction and additional help they required.

That made districts vulnerable to violating state and federal rules that guarantee special education services to children with disabilities, district administrators said, and was one of the major reasons they brought state education officials and Gov. Jared Polis to court. Their lawsuit, however, was dismissed earlier this month after a Denver district court judge ruled the plaintiffs did not have legal grounds to sue, Chalkbeat Colorado first reported.

But their concerns have stayed with the Department of Early Childhood, which revised the way it pairs kids with disabilities and preschool programs so that the enrollment process is “as seamless as possible for both families and districts,” Universal Preschool Director Dawn Odean told The Colorado Sun.

The new preschool program offers up to 15 hours of free preschool per week for kids in the year before they enter kindergarten and additional subsidized hours for students with disabilities who come from low-income households. 

Continued

California - LAUSD families still struggling to access disability supports

By Mallika Sheshadri, Ed Source, July 19, 2024

When the Covid-19 pandemic led to school shutdowns in 2020, and students began plugging into their classes online, Naomi Burn saw her 17-year-old son’s grades soar. 

Her son seemed more engaged, completed his assignments and was in better spirits. The virtual classes seemed to serve him better. So, when face-to-face instruction returned, Burn decided to enroll him in one of the district’s virtual academies, where he would also be able to receive the counseling outlined in his individualized education program (IEP). 

But in October 2023, Burn received an unexpected message from her son’s psychiatric social worker, who had previously provided him with the support he needed. 

“He was removed from my caseload at the start of the year, and due to staffing issues, none of the virtual students are receiving their IEP services,” the email read. “I hope they are able to find a solution soon, so that he may begin to access this support.” 

Several months later, Burn received an email from the district offering a solution: a chance to make up for lost services whenever the district has adequate staffing. Karla V. Estrada, LAUSD’s deputy superintendent of instruction, told EdSource in January that any problems with unfulfilled IEPs at Burn’s son’s school had been fixed. 

On Jan. 9, the next day after Estrada’s statement, Burn said nothing had changed. No one had reached out to her. Her son’s educational plan and needs were still not addressed, and the family was still waiting. 

“I understand it’s a societal issue,” Burn said. “But, at the same time, today’s counseling minutes don’t help the child with yesterday’s emotional social barriers.” 

Burn is one of many parents in the Los Angeles Unified School District who say they have struggled to get their children adequate disability accommodations and support this past academic year. They say the district has been largely unresponsive and are concerned about possible repercussions for their children. 

Experts warn that not providing accommodations in a timely manner could worsen students’ disability symptoms, while adding additional hurdles, including social and emotional challenges. 

Meanwhile, the number of district students with disabilities continues to grow, and teachers have sounded alarms that as their workloads skyrocket, more student needs could go unaddressed. 

Continued

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

VOR SUPPORTS:

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

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

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

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

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

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

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

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

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

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

H.R.670 - Think Differently Database Act

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

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

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

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

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

H.R.3380 - HEADs UP Act of 2023

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

VOR OPPOSES:

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

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

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

S. 1148 - The Guardianship Bill of Rights

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

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

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

VOR HAS SIGNIFICANT CONCERNS WITH:

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

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

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

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

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

S.3118 - The HCBS Relief Act of 2023

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

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



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