July 12, 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.

“As autism rates continue to surge in the U.S., and as our growing nationwide base of families faces increasingly urgent issues regarding treatment, policy and care, we are thrilled to have Jackie Kancir, a nationally recognized advocate, help us lead the way toward meaningful reform,” said NCSA president Jill Escher.

In this new role, Kancir aims to foster authentic recognition of the disparities faced by the severe autism community and partner with other groups to break access barriers, fill service gaps, and enhance the overall quality of life for individuals with severe autism and related disorders.

As the survivor of a brain tumor that left her with permanent disabilities, Kancir brings a fresh and robust lived experience to strengthen NCSA’s commitment to a better world for all affected by severe and profound autism. She is the third generation working in the field of developmental disabilities and is a sibling, parent, and self-advocate.

“The severe and profound autism communities face many disparities in housing, in Home and Community Based Services (HCBS), a lack of representation in research, obstacles for family caregivers, and higher rates of police and hospital encounters, as well as seclusion and restraint in schools,” explained Kancir. “It's my life's mission to change this.”

Kancir has volunteered with NCSA for several years, first on the policy committee and then as State Chair of the Tennessee Chapter of NCSA. In early 2024, NCSA appointed Kancir to the role of national Policy Director. She volunteers as the Patient Advocacy Director for the SynGAP Research Fund (SRF) and sits as a member of the Statewide Planning and Policy Council (SPPC) for the Tennessee Department of Disability and Aging.

Kancir resides in west Tennessee with her adult daughter, who has profound autism and a rare disease, SynGAP1-related disorder – a leading genetic risk factor for autism spectrum disorder.

Read the full announcement here

Congratulations Jackie, and all our best to our friends at NCSA!

Living in limbo: Tennessee DCS places kids indefinitely in group homes awaiting “Evaluations”

By Anita Wahdwani, Tennessee Lookout, July 8, 2024

The Tennessee Department of Children’s Services, already facing a class action lawsuit over its treatment of disabled kids, is placing children with no known disability diagnoses for months at a time in privately-run group homes designed to support adults with disabilities, according to child advocates.

The homes serve as way stations before appointments open up to have children evaluated for potential disabilities or mental health issues that, in some instances, they do not have.

Children and teens are enrolled in nearby schools, but aren’t allowed to have friends over, prepare their own snacks, keep their cell phones, receive the usual $2 weekly foster kid allowance or have someone check their homework or grades, said Emily Jenkins, an attorney for the Tennessee Justice Center and a longtime child welfare advocate. While a child is living in a group home awaiting an evaluation, efforts to find a foster home for that child come to a halt, she said.

“And now it’s summer and they’re just waiting around in these homes with no support,” Jenkins said.

“This is just another way DCS is placing children in non-family settings,” Jenkins said. “We’re taking a huge step backwards on progress that has been made to ensure the first and best place for a kid is in a home.”

The privately-run “supported living” homes previously contracted with the Department of Intellectual and Developmental Disabilities (DIDD) for adults.

They are separate from state-owned group homes that house adults with severe medical and intellectual disabilities, where DCS also houses children.

Last month the Lookout reported that DIDD informed loved ones of adults living in the state-owned homes they would be “decommissioned” to make way for children in state custody — a move that the state agency has since backed down from after facing backlash from the families and disability rights advocates, affected families told the Lookout.

A DCS spokesperson last week said the agency would by Friday provide answers to questions submitted two weeks ago about how many children are placed in group homes for the disabled and for how long. The agency provided no response on Friday.

The state’s troubled child welfare agency has been subject of mounting scrutiny in recent years over its mistreatment of children in its care.

Continued

Disabled students are struggling to get what they need at school

By Jonaki Mehta and Marc Rivers, WNYC (NPR), July 5, 2024

Sam is a smiling, wiggly six-year-old who loves dinosaurs and "anything big and powerful," says his mother, Tabitha, a full-time parent and former special education teacher. Sam lives with his seven siblings and parents in a small town in central Georgia.

Sam has significant disabilities including cri-du-chat syndrome — a rare genetic disorder. He can use a walker for short distances, but he mostly gets around using a wheelchair.

Lately, Sam has been bestowing Sign names upon everyone in his house— Sam primarily communicates using American Sign Language (ASL) because he's partially deaf. His own name translates to "Sam Giggles," which he does a lot.

Since Sam started going to school, Tabitha says he has faced a number of challenges getting the services he needs, including classroom instruction in ASL.

"How do you teach a child to learn if they don't even speak the same language as you, and you haven't found a way to bridge that gap?" Tabitha asks.

On top of language barriers in the classroom, Sam also hasn't been getting special education support, and he has had trouble accessing the school grounds in his wheelchair. Since February of last year, Sam has been doing virtual school, and before that, he was going to school in-person. At first, the school was unable to provide a wheelchair-accessible bus.

"I think that these stories are tragic for the teachers. I think they're tragic for the students," Tabitha says. "I think what we've failed to do as a society is not make it tragic for the people who are making the decisions."

Seeking solutions

Tabitha has spent years fighting to get Sam the services he needs to get a free and appropriate public education, which is guaranteed by federal law. Eventually, she turned to the federal government for help and filed a complaint with the Department of Education's Office of Civil Rights.

It was a culmination of many things – like the fact that Sam's school acknowledges that he primarily communicates in ASL, and that his hearing could worsen, but he has yet to receive instruction in his native language.

District reports say Sam's current hearing loss does not meet the state of Georgia's criteria for "deaf or hard of hearing," meaning they don't have to provide him instruction in ASL.

"When I got to the point where I felt like I couldn't do anything about it and yet I knew the law was on my side. That's when I decided to file." Tabitha recalled.

She felt like a federal complaint was a last resort to get Sam a quality education. But the investigation into his case has been going on for a year and a half now. It's time that Sam can't get back.

Scarce resources

Over the course of a year – in 2022 and 2023 – the Department of Education received over 19,000 discrimination complaints based on race, color, national origin, sex, age and disability. NPR heard from many parents around the country who said their cases took too long to resolve.

Catherine Lhamon is the assistant secretary of education for civil rights. She says she shares these families' frustration about long wait times, but that a thorough investigation involves an often complicated, time-consuming process.

Lhamon says that the OCR's investigators are also overwhelmed, with more than 50 cases each. Part of the problem is a backlog from the pandemic, and a severe special educator shortage around the country. But it's also about money.

"Last year, Congress flat-funded our office. And that has meant that we are not able to bring on new people even though we are now seeing close to double the cases that we were seeing ten years ago," Lhamon said.

Continued

Opinion: Texas must do more for people with intellectual and developmental disabilities  

By Kristi Daugherty, El Paso Matters, July 9,2024

In recent years, the Texas Legislature has made historic investments in mental health programs. While these efforts are commendable, services for individuals with IDD (intellectual and developmental disabilities) remain critically underfunded, creating a crisis that threatens the well-being of one of our most vulnerable populations.

As the CEO of Emergence Health Network, which serves as both a Local Mental Health Authority and a Local Intellectual and Developmental Disability Authority in El Paso County, I have witnessed firsthand the impact of these funding gaps. EHN, along with partners throughout the state that provide similar services, have identified service gaps that require urgent legislative attention to ensure the IDD community in Texas can thrive.

LIDDAs like EHN are the point of entry for publicly funded IDD programs. We are responsible for enrolling eligible individuals into Medicaid programs, including intermediate care facilities, home and community-based services, and Texas home living, and employ direct care workers who are essential in providing these services.

Direct care workers are the backbone of our community-based IDD services. They play an essential role in supporting individuals with IDD, assisting them with daily tasks such as managing medications, cooking, and housekeeping. Their work enables individuals with IDD to lead fulfilling lives, learn new skills, and actively participate in their communities. 

However, despite their crucial role, direct care workers in community settings face a stark wage disparity compared to their counterparts in state-supported living centers. While the Legislature’s recent adjustments raised state direct care workers’ wages to $17.71 per hour, community DCWs saw their wages adjusted to only $10.60 per hour.

Although at EHN we are able to supplement salaries for our staff, this significant disparity hampers the LIDDAs’ ability to attract and retain qualified staff, exacerbating an already severe workforce crisis.

The consequences of this workforce shortage are dire. Providers often struggle to deliver basic services, and understaffed residential settings can lead to increased errors and compromised care. Many providers across the state have been forced to close homes, relocating individuals to inadequately equipped settings. Others are limiting the services they provide, despite legislative funding intended to support thousands of individuals.

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.



Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

info@vor.net

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?

Do you have information or a news story you would like to share?

Is there legislation in your state house that needs attention?

Contact us at info@vor.net