December 8, 2023

VOR's Weekly News Update

VOR's December Quarterly Networking Meeting

On Zoom

Monday, December 11, 2023

7 pm Eastern / 6 pm Central / 5 pm Mountain / 4 pm Pacific

Open to All

What Matters Most to Your Family?

Please join us for our next Quarterly Networking Meeting, when we ask our families about their priorities for our advocacy in 2024.

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To join the meeting, click on the Zoom link below

https://us02web.zoom.us/j/87692640261?pwd=MmNBb1F5NXQ3dEJDbFZHb0tjcUtldz09

Meeting ID: 876 9264 0261

Passcode: 427783

VOR's Winter Fundraising Campaign

It is December, and we are behind on our

year-end fundraising.

This is a critical time for all of our fundraising efforts.

Please help us, so that we may continue to help you.

Thank you for your support!

FREE ONE-YEAR DIGITAL MEMBERSHIPS

For the month of December, we are offering Free One-Year Digital Memberships to new subscribers.

We want to get more information out to more people and hopes to be a resource for families. Please feel free to take advantage of this offer and share the link with anyone you like.

Please click on the link below.

A unique gift shop tucked away in the Beatrice State Developmental Center, which cares for adults with mental and physical disabilities, features items made from people who live and work there.

The goal of the art studio and gift shop is to give those living at the center a chance not only to work, but to feel like part of a community and have a sense of purpose.

“Having a disability doesn’t mean that you don’t have abilities,” said Lisa Schultis, supervisor of Bear Creek Gift Shop. “Finding what you like to do in life is a part of having self-esteem and (confidence).”

The residents said they love getting paid and having money to spend.

While working on a project, David Courtney said, “This is what I’m doing to get paid to earn a paycheck so I can go buy stuff with my wallet and debit card.”

Most people wouldn’t think earning a paycheck is that special, but for the residents, it gives them a sense of autonomy and accomplishment.

“It’s good for me,” said Jenny Rossecrans, another resident. “I felt happy because I love to work out here and save my money and buy some good stuff out here.”

One of the types of products sold are ceramics, but that’s just a small portion of all the items found inside the store.

With Christmas a few weeks away, the workers and staff want you to consider shopping at their store.

“You can buy a Christmas gift anywhere, but I feel like the gifts that are the items we make and the gifts that we sell are unique,” Schultis said. “And you’re supporting individuals with disabilities when you purchase items here.”

All of the revenue at the shop goes right back toward making more items and paying the workers.

The store is open from 9 a.m. to 4 p.m. Monday through Friday, but Schultis said she would be more than happy to open back up later if needed.

She also said the shop takes custom orders. Reach out on Facebook to let the staff know what you would like them to create. 

Watch the video here

Census Bureau Changes may Artificially Reduce Number of People with Disabilities in Half, Advocates Say 

By Mike Schneider, Associated Press, December 8, 2023

The U.S. Census Bureau wants to change how it asks people about disabilities, and some advocates are complaining that they were not consulted enough on what amounts to a major overhaul in how disabilities would be defined by the federal government.

Disability advocates say the change would artificially reduce their numbers by almost half. At stake are not only whether people with disabilities get vital resources for housing, schools or program benefits but whether people with disabilities are counted accurately in the first place, experts said.

Some also question the timing of the change, which comes just as more people are living with new, long-term conditions from the COVID-19 pandemic.

Census Bureau officials say the proposed change on its most comprehensive survey of American life will align the U.S. with international standards, allowing comparisons among countries. They also say it will better capture how disabilities occur in the real world, since they rarely fit neatly into stark yes-or-no boxes that don't account for variations or nuance.

“The bureau has spent time, money and energy trying to improve counts of racial and ethnic minorities who have been historically undercounted, but the statistical agency seems willing to adapt questions that will shortchange the numbers of people with disabilities,” said Scott Landes, an associate professor of sociology at Syracuse University.

“This, in my mind, is illogical,” Landes, who is visually impaired, said in an interview. “There is a piece of me that thinks, 'How dare you — to think that we don't count.' I get offended."

Continued

Florida Families Take the Fight for Disability Services into their Own Hands   

By Emma Rodriguez, Democracy Watch via WCGU, December 7, 2023

With Florida lawmakers as the target audience, a Collier County mom has gathered about 800 Florida families over the past 15 weeks to create the group "We the People" to advocate for

family members with developmental disabilities.

Since 2011 more than 20,000 people have been on the waitlist for Florida’s Developmental Disabilities Individual Budgeting Waiver, better known as the med waiver, funded by federal and state matching dollars.

The waiver covers most medical needs, live-in care and out-of-home care for those with specific developmental disabilities, including autism spectrum disorder, spina bifida and down syndrome.

“Before you're 21 in the state of Florida, you're entitled to services like speech therapy, occupational therapy, and nursing because they’re made to happen through the schools,” Nordin said. “But after you graduate, there is no long-term care for people with these disabilities unless you become eligible for this waiver. And it’s expensive, so unless you’re a Rockefeller, you need the waiver.”

The high waitlist numbers are a product of continuously low funding. Florida ranks 49th out of 50 states for per-capita spending on services for people with disabilities, and that low spending has a trickle-down effect. The state is unable to adequately pay existing care providers, who then leave the industry, leaving more Floridians without services.

Those on the waitlist for the waiver have their needs evaluated. Priority is given to those found to be in crisis.

Amanda Hayes of Palatka applied for crisis services for her son Jayden in March. But her application made no progress. Becoming a part of Nordin’s group in August motivated her to share her story with legislators in her area. It all resulted in her son being approved to receive the waiver.

“Becoming a part of the group really propelled me to talk to my state legislator again, even though I had already talked to him before. His district aide started helping me find resources,” Hayes said. “I found out a couple of weeks ago that Jayden was finally approved for the med waiver. I don’t know if it was [state legislator’s district aide’s] emails she sent to whoever she sent them to, or the video of me speaking at a delegation meeting, but it all helped.”

Continued

Dubbed Jobs That Care New Jersey, it lists open positions in two fields sorely in need of staff, direct support professionals and certified home health aides. Labor shortages plague both industries, which are charged with caring for some of New Jersey’s most medically fragile residents.

“Bolstering our caregiving workforce has long been one of my top priorities, and while we have invested in these critical jobs through wage increases and supports, we’ve now made it easier to connect job seekers to these essential job opportunities,” Human Services Commissioner Sarah Adelman said in a statement Tuesday.

Direct support professionals are employed by companies that care for the roughly 10,000 people with disabilities living in New Jersey's 2,200 group homes. The scarcity of aides has been a long-standing quality-of-life issue for residents, who depend on support professionals for everything from social activities to cooking, bathing and transportation.

Certified home health aides assist adults ages 60 and older, as well as others including some children with chronic medical conditions. They help clients at home and in other settings with daily activities such as bathing, meal preparation, and shopping. Home aides work under the supervision of a registered nurse in a variety of settings, including assisted living residences, nonprofit homemaker-home aide agencies and health care service firms.

Read the full article here

Physical Therapist Practices Face Staffing Shortages — and Kids are Paying the Price

By Shiv Sudhakar , Fox News via the NY Post, December 3, 2023

The physical therapist will not see you now.

Outpatient physical therapist (PT) practices are experiencing severe staff shortages, with the highest vacancy rates at 17%, according to a recent report by the American Physical Therapy Association (APTA), a nonprofit group based in Virginia. 

The report is based on survey responses from 133 outpatient physical therapy practices across the U.S., which include 2,615 clinics and some 11,000 full-time employees, ranging from support staff to PTs. The survey was conducted between May 25 and June 16.

The pandemic may have accelerated the staffing shortage, but only 1.7% of owners of physical therapy practices cited COVID-19 as the primary reason for leaving, per the press release.

Most survey respondents said the big drivers of employee loss were salary, relocation and work-life balance issues.

Among the business owners, 37.3% cited relocation, 25.4% blamed salary and 22.9% said issues with work-life balance were the reason that employees left practices.

“There is certainly a shortage of physical therapists, especially here in New York, and the pediatric population is suffering,” Dr. Susan Taddonio, assistant professor at Long Island University and a practicing pediatric physical therapist based in New York, told Fox News Digital.

Physical therapists are also retiring, changing careers or selling their practices to corporate entities, added Taddonio, who was not involved in the survey.

“The sad fact is that we go into physical therapy with a major desire to improve the lives of the people we serve … and the rewards at the end make meeting the costs of living and paying off student debt difficult at best,” Dr. Marilyn Moffat, professor of physical therapy at New York University in New York, New York, told Fox News Digital.

The sad fact is that we go into physical therapy with a major desire to improve the lives of the people we serve … and the rewards at the end make meeting the costs of living and paying off student debt difficult at best,” Dr. Marilyn Moffat, professor of physical therapy at New York University in New York, New York, told Fox News Digital. 

It’s tough for many potential students to rationalize investing in a physical therapy education that may not yield a return on their investment, added Moffat, who was not part of the survey.

Students typically spend four years earning a bachelor’s degree before embarking on a three-year program to graduate as a doctor of physical therapy.

Read the full article here

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

VOR SUPPORTS:

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.



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Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

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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.

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What's Happening In Your Community?

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