May 24, 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.

VOR's 2024 Annual Meeting

Official Date: June 23, 2024

We will begin with a Board meeting open to members, discussing the state of our organization and the direction of our advocacy work, followed by presentations from our guest speakers, and wrapping up with our annual

Reports from the States.

We are thrilled to announce that we will feature our dear friend, Jackie Kancir. Jackie is the Policy Director of the National Council on Severe Autism, the Tennessee Mom of a daughter diagnosed with SYNGAP1, a frequent blogger at "What We Need Yesterday", and the co-proprietor ( with her daughter Jadyne) of Bunny Egg Acres.

We are also delighted to feature Joseph Macbeth, the President of the National Association of Direct Support Professionals. Joe will share his insights on the workforce and their perspectives on caregiving, the need for safety, security, better training, and a career path, and how VOR members can advocate to rebuild the DSP workforce.

Meet Ursula

Ursula is VOR's 2024 Teddy Bear, crafted by our very own Mary Reese.

And Ursula needs a new home...

More about Ursula soon...

Tennessee - Families Worry State wants to 'Evict' Adults with Severe Intellectual and Developmental Disabilities 

By Ben Hall, News Channel 5 Nashville, May 23, 2024

Families of severely disabled residents worry the state wants to move their loved ones out of state-run community homes and into private care.

The residents — who have intellectual and developmental disabilities — have been in state care for decades, some having lived at Clover Bottom before it was closed.

This month the Department of Intellectual and Developmental Disabilities sent an unsigned letter to "Family Members and Conservators" stating it is "decommissioning" state-run homes that currently house adults.

The letter said the state wants to use the homes to care for children in state custody with "significant medical needs," and it will begin looking for "transition opportunities for those we currently serve."!"

Dianne McVetty is a conservator for her brother, Clark, 62, who cannot speak and has been in state care for 45 years.

She was shocked when she received the letter.

"To me, they are destroying my brother's life," McVetty said.

Clark moved into a state-run community home nearly 10 years ago after the state closed Clover Bottom.

The community homes have around-the-clock medical care in a neighborhood setting.

Dianne said her brother has thrived and now goes to church and has a YMCA membership.

"They are evicting these people that lived in these homes for 10 years and that's not right. It's wrong," McVetty said.

The Department responded in a statement that "no one is being evicted from their homes."

"We are asking people living in our community homes to consider alternative placement," department officials said. 

The department said there are more private options available for adults with intellectual and developmental disabilities than for children. But family members who received the letters feel like their loved ones are being pushed out.

Becky Moss's daughter, Kelly, is partially paralyzed and unable to speak after a traumatic brain injury from a car wreck.

She has been in state care for 32 years and was also at Clover Bottom.

"It's not right to tear them out of what they've known after they have already been done that way," Moss said. "To split them up will be devastating to all of them."

Continued

Texas - Man With IDD Stuck In Jail For 5 Months After Group Home Called Police

By Cody Copeland, Fort Worth Star-Telegram, May 20, 2023

The mother of a 21-year-old inmate in Tarrant County Jail says her son has the mental capacity of a young child and is pleading with prosecutors to drop charges so he can get the care he needs.

Kai’Yere Campbell has an intellectual and developmental disability and is unable to understand why he has been incarcerated for five months, according to his mother, Shantel Taylor. He has been deemed incompetent to stand trial and ordered to a mental health facility, but authorities say there is not space anywhere to send him.

“He is a child who cannot comprehend the adult world,” Taylor said in a statement sent to the Star-Telegram. “But now he is being punished by the justice system for behaviors that are a symptom of his developmental disability.”

She ended her statement with a plea addressed to District Attorney Phil Sorrells.

“As a parent, I am humbly begging the district attorney as well as those involved in Kai’Yere’s ‘inner circle of care’ to please do whatever it takes to get him access to (a state-supported living center) for the appropriate level of care,” she said. “My son does not need punishment, he needs care.”

Campbell was arrested in December on charges of assault on an elderly person. He has since lost over 100 pounds, and does not understand that he needs to put clothes on, Taylor said.

His case has since attracted the attention of advocacy groups who are joining in calls for Campbell’s release.

Speakers during public comments at a Tarrant County Commissioners Court session this month called on county leaders to act, saying that the walls of Campbell’s cell are covered with excrement and scraps of food.

The person Campbell allegedly assaulted, a 72-year-old nurse in a group home where he was living in December, never wanted charges filed against him, according to Pamela Young, an organizer with the advocacy group United Fort Worth.

“When the police were called, they were called to take Kai’Yere to JPS Mental Health,” she said, referring to the taxpayer-supported hospital in Fort Worth.

Young added her voice to the call for Sorrells to drop the charges against Campbell, who she said is an 8-year-old developmentally.

“The DA is treating him like an able-minded adult who has control over his body — Kai’Yere can’t even take care of himself without 24/7 assistance. The DA is criminalizing him and it needs to stop,” she said.

Such arrests are common in group home situations in Texas, according to Krishnaveni Gundu, co-founder and executive director of Texas Jail Project.

“I cannot tell you how many times we hear that about people who are arrested in group homes. They are caseworkers and they’re nurses, and all are saying we called for help,” Gundu said. “We wanted him to get help, because they were not equipped to provide him the kind of help and care he needed.”

Continued

Illinois - Charlie Meier's Fight Against HB 793: Protecting Developmentally Disabled Workers

Metro East Sun, May 18, 2024

The past week in Springfield saw the continuation of committee work and voting on Senate bills. Despite a relatively quiet week, the coming weeks are anticipated to be filled with controversial bills, heated debates, and substantial work. Additionally, there was an opportunity to welcome constituents to the Capitol.

This week's update is slightly different as it includes an op-ed written by Charlie Meier, 109th District State Representative and Assistant Minority Leader, about the impending legislation that aims to impose stringent mandates on workshops providing employment opportunities for residents with intellectual and developmental disabilities. Meier has been actively opposing these mandates for over two years now.

In his op-ed titled "Well-Meaning HB 793 will Cost Developmentally Disabled Workers Their Jobs and Their Dignity," Meier expresses his concern about several unresolved major issues as the legislative session nears its end. He recalls his fight against a governor who attempted to close the Warren G. Murray Center in Centralia and how it took years of collective efforts from volunteers, lawyers, and lawmakers to prevent this closure which would have adversely affected families and residents at the Murray Center.

Meier emphasizes his dedication towards ensuring that Illinois does right by individuals and families in State Operated Developmental Centers (SODC) and Community Integrated Living Arrangements (CILAs). His focus is primarily on fighting for facilities, residents, and their families - a fight he takes immense pride in having been successful at.

The purpose of his lengthy essay is to draw attention once again to an issue currently under process that could potentially affect the future of the developmentally disabled community he works tirelessly to protect. The issue pertains to 14c workshops - non-profit organizations where people with developmental disabilities learn skills and perform menial tasks as a means of socializing outside their homes while contributing positively to society.

These workshops have proven their worth over time through successful partnerships with companies that support their mission. However, concerns arise as the individuals working in these workshops are paid less than Illinois' minimum wage. Meier led opposition against legislation to raise this wage to match the state's minimum wage during the last spring session, arguing that such a move could lead companies to shut down these programs due to economic considerations.

Meier also highlights the potential fiscal impact of HB 793 on employers. If passed and signed into law, it could increase employer costs from just over $7.5 million to more than $27 million. This, coupled with higher taxes on client income and potential jeopardization of their Social Security Disability Insurance (SSDI) Benefits, has led Meier to firmly believe that HB 793 would cost at least 50% to 70% or higher of these people their jobs and purpose in life.

Continued

Read Rep. Meier's editorial here

Follow up on last week's story

Indiana Protection, Advocacy Services Commission Files Lawsuit Surrounding Upcoming FSSA Changes

By David Gay, Fox 59 News, May 17, 2024

The Indiana Protection and Advocacy Services Commission has filed a lawsuit in Indianapolis federal court against the Indiana Family and Social Services Administration surrounding upcoming changes to the state’s Aged and Disabled Medicaid Waiver program.

On July 1, the administration is expected to implement changes to the A&D Medicaid Waiver program, stating that at that point, parents or legal guardians of a minor (Legally Responsible Individuals) will no longer be allowed to provide attendant care and receive payments through the waiver program.

The FSSA made this announcement after there was a reported variance of more than $980 million in state funding compared to “previously anticipated expenses” in relation to the Medicaid program. 

In a statement from the FSSA at the time, officials said that there were reported increases in attendant care expenditures under the waiver which was a “significant driver of the rapid and unanticipated growth” in the state’s Medicaid spend.

“Attendant care is a service under the waiver that provides unskilled care to older adults and people with disabilities, including children, with daily activities such as bathing, meal prep and household tasks,” the statement read. “The agency’s research further showed the increased expenditures were in part due to paying parents of minor children and spouses hourly to support daily activities for their loved ones. FSSA identified and selected a path that permits parents of minor children and spouses to continue to provide paid care to their loved ones in a fiscally sustainable way through another service called Structured Family Caregiving, while still receiving other eligible services on the Aged & Disabled waiver.“

The lawsuit argues that FSSA’s decision surrounding the program violates federal Medicaid rules, stressing that through the structured family caregiving service, FSSA fails “to ensure that providers of this service are paid a livable wage.” The lawsuit also argues that in order to receive the service, “families must forgo other services necessary for their children.,” putting them at risk to be institutionalized, which they said violates the Americans with Disabilities Act.

“Children with medically complex conditions often need near constant care and supervision. Parents and families have for years been able to cobble together a patchwork of services and caregivers, including serving as paid caregivers themselves, to ensure their children have what they need to live safely in the community,” Melissa Keyes, the executive director at Indiana Disability Rights, said in a news release from the ACLU of Indiana surrounding the lawsuit. “Now, FSSA is throwing a wrench in those plans without ensuring there are appropriate alternatives available.”

Continued

Opinion: Will California Break its Promise to Those with Intellectual and Developmental Disabilities?

By Barry Jardini, San Diego Union-Tribune, May 22, 2024

Gov. Gavin Newsom has proposed a state budget in direct conflict with the promise California made decades ago to Californians with intellectual and developmental disabilities.

Since 1969, the Lanterman Act has set California apart from every other state by promising community services and support that empower Californians with developmental disabilities to live the lives of their own choosing. This landmark legislation is unique today, even as federal actions like the Americans with Disabilities Act and the Olmstead Decision have improved the lives of people with disabilities nationwide.

It’s a promise that all Californians can be proud of — if it’s a promise we intend to keep.

California faces a significant budget deficit this year, which means that lawmakers have tough decisions to make regarding limited state funds. To save money, Newsom is proposing to delay desperately needed rate increases for disability services that were promised several years ago. The proposed delay would cut $1 billion in funding expected this year, nearly half of which are federal dollars that would be lost, since the federal government matches a percentage of state funds used for developmental disability services. When the state cuts funding, the federal funding is cut as well.

As executive director for the California Disability Services Association, representing more than 115 community-based organizations throughout the state who provide the full range of services and supports, I hear directly what the proposed delay will mean for Californians with disabilities and their families. The funding delay would have real impacts on their lives. If allowed to pass as is, it will be felt by an estimated 458,000 Californians with disabilities and their families in the next year.

Unfortunately, the state is establishing a trend of balancing the budget on the backs of Californians with disabilities. California made a series of deep cuts to disability services funding during the Great Recession era. It has taken more than a decade to slowly reverse this trend. It wasn’t until 2016 that the state Legislature directed the Department of Developmental Services to commission a rate study. The rate study presented to the Legislature in 2019 found that disability services were underfunded by nearly $2 billion per year.

The Legislature recognized the need to address this chronic underfunding in 2021 and negotiated with Newsom to develop a multi-year funding plan. In 2022, state leaders acknowledged the urgency of restoring funding and agreed to hasten the implementation timeline by a year. A completion date of July 1, 2024, is required under current law. The need has only become more urgent, yet the current budget proposal disregards that by delaying it again.

The direct effect of underfunding is high direct support professional turnover and vacancy rates. Inadequate funding drives the direct support workforce into poverty wages that can’t be increased with the cost of living or keep up with competition in private industries. This results in barriers to service access and reduced quality, destabilizing the lives of individuals who rely on services.

Disability service providers already can’t compete. The State of America’s Direct Support Workforce Crisis 2023 report by ANCOR found that 95 percent of providers report staffing shortages.

More than 70 percent are turning away new referrals or struggling to meet quality standards as a result.

These nationwide issues are exacerbated in California, where the cost of living is higher, wages are more competitive and demand for services is greater. Service providers are only receiving 50 percent of the difference between the rate they started with in 2021 and the rate that Newsom has proposed to delay. Meanwhile, the starting hourly wage at fast food locations went up to $20 an hour in April. If the health care minimum wage proceeds as planned, which doesn’t include direct support professionals in the intellectual and developmental disabilities industry, those jobs will be paying $21 an hour starting in June.

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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