February 23, 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 Legislative Initiative

MAY 7 - 9, 2024

Back to Capitol Hill!

We are pleased to announce some of the details of our 2024 D.C. Initiative.

We have contracted with YOTEL, on New Jersey Avenue near the Senate side of Capitol Hill. We have reserved a block of rooms for the days of the event, at an incredible rate of $179 + tax for a king size bed, or $209 + tax for a double room with two queen sized beds, for those who want to share. YOTEL has renovated what was formerly the Liaison Hotel, where we stayed for several of our D.C. events in years past.

We plan to arrive on the afternoon of Monday, May 6th, and have an informal

get-together that evening. We will meet with congressional staffers from our state representatives on Tuesday, May 7th and Wednesday, May 8th. We also plan on meeting with staff on some of the congressional committees that are discussing the bills that affect our loved ones with I/DD and autism, and some of the federal agencies like DOJ, DOL, CMS, HHS, and ACL to remind them of our issues and our concerns with many of their activities.

As always, we will provide our participants with contact lists for the congressional staff members for their state's D.C. offices. In the weeks before the initiative, we will hold meetings on Zoom to go over the materials we will be sharing with legislative offices and to help participants prepare for their meetings.

If you would like more information, please email us at [email protected]

Registration for the event begins next week.

We ask that all participants in the 2024 Legislative Initiative are

current members of VOR.

Announcing:

VOR's Quarterly Networking Meeting

March 25, 2024

5 pm Eastern, 4 pm Central, 3 pm Mountain, 1 pm Pacific

on Zoom

This month's topic:

"How can we better communicate and connect with others in-state"

We often rely on our ICF family groups to network with others who share our concerns, but what do we do when we need to connect other ICF groups, or folks with similar concerns who have loved ones in HCBS group homes or who receive services for their child who lives with them in their own home?

When an ICF closes, how do we keep the support and advocacy we once knew when families are separated and their loved ones live elsewhere across the state?

Not everyone wants to put up a Facebook page or start another in-state organization with monthly meetings. Not everyone can make it to legislative hearings in the state capital. Some of us simply want to create better networks for like-minded folks, without obligations.

Join with us on Monday, March 25th as we discuss ideas for how we can work to improve networking and in-state advocacy.

Registration for this is free, and is open to the public. You don't need to be a member of VOR to attend this meeting.

Please click here for more details and a link to the Zoom meeting.

The President's Committee for People With Intellectual Disabilities - Next Meeting March 21, 2024

The President's Committee for People with Intellectual Disabilities (PCPID) will host a virtual meeting for its members to address issues surrounding Home and Community Based Services (HCBS) to be examined in the Committee's Report to the President. All the PCPID meetings, in any format, are open to the public. This virtual meeting will be conducted in a discussion format with committee members addressing the issues and recommendations identified by PCPID workgroups proposing to be incorporated in the PCPID Report to the President.

We urge our members to attend this virtual meeting, and to submit comments (polite comments, please) to the committee regarding your loved ones and their needs for residential, medical, and behavioral services.

Please click here for more information, to register for the meeting, or to submit comments to the PCPID.

Massachusetts - Has The State Been Using Hundreds of Millions of Taxpayer Dollars in a Reserve Fund as Promised to Boost Direct-Care Wages?

By Dave Kassel, the COFAR Blog, February 20, 2024

The state has appropriated more than $400 million in taxpayer funds to a human services provider reserve fund over the past two years, with at least three quarters of that amount supposed to be used to raise wages of direct-care staff of human services providers in Massachusetts.

Low wages have caused a continuing staffing shortage and worsening care in corporate provider-run group homes funded by the Department of Developmental Services (DDS).

Governor Healey is now pledging an additional $390 million to the “Chapter 257 Human Services Reserve” line item in the coming Fiscal Year 2025 budget, bringing the total appropriations to nearly $800 million. Chapter 257 was a law passed in 2008 that was intended to biennially set and increase state payment rates to human services providers.

But there seems to be little or no available information thus far as to:

• The amount of money in the reserve fund that has actually been spent to date to boost direct-care wages;
• How the administration or Legislature are able to track whether providers are raising those wages.

Continued

North Carolina - A Hospital is Suing a Quadriplegic 18-Year-Old to Make Her Go to a Nursing Home

By Joseph Shapiro, NPR All Things Considered, February 21, 2024

A young North Carolina woman has refused to go to a nursing home in another state. While she wants to leave the hospital, she asks to live in her own home, close to family and her school.

Alexis Ratcliff is a quadriplegic. She can't move anything below her neck. That's why she needs that ventilator to push oxygen into her lungs. She came to this hospital in Winston-Salem, N.C., when she was 18 months old after a car crash. Doctors here saved her life. Her mother was driving that car. She was high, got charged and went to prison. Alexis was sent home to live with other family, but that ended when her grandfather had serious health problems and moved to an assisted living facility.

So in 2019, at the age of 13, Alexis returned to this hospital, Atrium Health Wake Forest Baptist. Except for one six-month break, she's lived here ever since. Now the hospital says it's time for her to go. It found a bed for her in a nursing home in another state. Alexis, who became her own guardian when she turned 18 last summer, said no. The hospital then sued her for trespass.

Read the full article here

A Cry for Change: The Plight of Gabe, Autistic and Nonverbal, in Iowa's Strained Mental Health System

By Nitish Verma, BNN News, February 19, 2024

In the heart of Iowa, a story unfolds that touches the core of a systemic issue, shedding light on the struggles faced by individuals with severe disabilities and the ongoing battle for adequate mental health resources. Gabe, a 20-year-old nonverbal autistic man, became the emblem of a much larger narrative when his challenges with violent outbursts led to an emergency commitment at a behavioral center. The dire situation roots back to the profound scarcity of mental health beds and an apparent lack of state support, leaving families like Gabe's in a relentless quest for care.

Gabe's story reached a critical juncture when his behavioral challenges, compounded by the absence of appropriate care facilities, resulted in his placement within a behavioral center. This move, while aimed at managing his outbursts, underscores a distressing reality for many Iowans. Gabe's father, voicing a sentiment shared by countless families, expressed profound frustration over the state's failure to provide necessary support. The ordeal highlights a gaping deficiency within Iowa's mental health infrastructure, particularly the alarming shortage of mental health beds that leaves many in dire straits.

Continued

Canada - Smart Home' Hopes to Help Young People with Intellectual Disabilities Thrive in Society

By Rachel Lau, CTV News Montreal, February 19, 2024

 A new "smart home" in Montreal is hoping to enhance the lives of eight young people living with intellectual disabilities or who are on the autism spectrum.

The $6.7 million project is a collaboration between all levels of government and the Fondation Les Petits Rois.

"I often say innovation is a must in housing. Today's project is a perfect example," said Quebec Housing Minister France-Élaine Duranceau. "I'm proud to inaugurate here in Montreal this home and concept."

Officials say the home is a unique concept in Canada, aiming to make daily life easier "by providing an environment that will enable them to thrive in complete safety and to learn continuously while fostering their self-esteem and independence."

"Supporting their autonomy and the realization of their full potential while respecting their ways of being and lifestyles is a goal that we all share," said Quebec Social Services Minister Lionel Carmant.

Technology in the smart home includes smart mirrors, learning screens and multi-sensory rooms.

"Thanks to technology, plus adequate and responsive support, young people will be able to play active and positive roles in the community," said Vânia Aguiar, president and founder of Fondation Les Petits Rois. "This home will be seen at local and international levels as a model for encouraging social integration and participation."

Continued

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

VOR SUPPORTS:

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.

VOR OPPOSES:

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

[email protected]

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 [email protected]