March 31, 2023

VOR's Calendar of Upcoming Events

Monday, April 10, 2023 - Our Spring Networking Meeting

4 pm Eastern, 3 pm Central, 2 pm Mountain, 1 pm Pacific

Please come join with likeminded families of individuals with I/DD and autism for our quarterly Zoom meeting. Our topic this month will be how we can work with state and federal officials to ensure the safety of our loved ones.

This event is open to all. We will send out an open link to the Zoom meeting next week, but it helps us to know who might be planning to attend and to send them a reminder and calendar invitation. So if you would like to register, please email us at info@vor.net

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Sunday, May 7, 2023 - VOR's Annual Legislative Initiative

3 - 5 pm Eastern / 2 - 4 pm Central / 1 - 3 pm Mountain / Noon - 2 pm Pacific

The meeting for our 2023 Legislative Initiative will take place on Sunday afternoon, on Zoom.

We ask that you register prior to the initiative, and that your membership is up to date.

We will supply the legislative "asks" in advance of the Sunday meeting, and we will supply you with contact information so that you may set up with your elected officials for the week(s) that follow.

The Sunday meeting will explain all that we are asking our legislators to do on behalf of our loved ones and the DSP caregivers who support their daily needs.

Registration will open next week.

You must be a current member or VOR to participate in this event.

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June 11, 2023 - VOR's 40th Anniversary Annual Meeting

Tentative Time - 11:30 am - 5:30 pm (Eastern)

Our Annual Members Meeting (again, on Zoom) will take place on the afternoon or Sunday, June 11th. The schedule is yet to be determined, but the program will include a "State of the Union" speeches from our President, Joanne St. Amand, our Treasurer, Larry Innis, and our Executive Director, Hugo Dwyer, as well as reports from our various committee chairs on their work through the past year.

This Year's Speakers:

Congressman Glenn Grothman - (R-WI)

Representative Charlie Meier (Illinois General Assembly)

Amy S. F. Lutz, PhD.

And, as we do every year, we will have a special networking meeting for our members to submit reports on what is going in their states, so that we can share our problems, solutions, strengths, and hope.

This event is open to all. Registration will open in May.

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Please consider supporting our advocacy by contributing as a

sponsor for any of these events.

Missouri - Sheltered Workshop Employees, Advocates Hold Rally at State Capitol

By Geoff Folsom, Missourian, March 26, 2023

Around 200 employees and supporters from sheltered workshops across Missouri traveled to Jefferson City Tuesday, March 21, with a message: they want to continue to have a choice to work at the facilities.

Among the workshops represented was Empac Group, which has locations in Washington and Sullivan. The agency employs 160 people with disabilities, in addition to over 40 other staff members.

“You meet a lot of freshmen legislators,” Empac CEO Tim Poepsel said. “You get to explain to them what the job means and what it entails.”

Sheltered workshop stakeholders made the journey to Jefferson City yearly before the COVID-19 pandemic, Poepsel said. After not going for a couple years, they had a smaller group visit in 2022 but returned at full strength this year.

Some have criticized sheltered workshops because they are not required to pay a minimum wage and because, while the workshops are designed to be a temporary measure as people with disabilities transition into more traditional employment settings, many sheltered workshop employees remain for years.

But some, like Union Alderman Barbara Laberer, whose daughter, Michelle, has worked at Empac for more than 15 years, say working a regular job is not a safe option for everyone with disabilities. Laberer was one of many Empac employees or family members who wrote letters of support that were provided to legislators, saying that despite many health problems, Michelle, 35, leads a “full and productive life.”

“We don’t want them to take it away,” Laberer said. “Michelle’s very naive and very gullible, so working out in the community is not an option for her. ... She doesn’t have that ‘stranger danger,’ as much as I’ve tried to instill that in her.”

Read the full article here

Missourians with Developmental Disabilities Languish in Hospitals, Jails, Shelters

By Rudi Keller, The Missuouri Independent, March 22, 2023

On a Friday afternoon in late December, Geri Curtis received a disturbing phone call informing her she had only five days to find a new home for a developmentally disabled person.

As part of her job as public administrator for Livingston County, she had become legal guardian of a person with severe developmental disabilities two months earlier. The person, autistic and unable to speak, was living in a residential support facility in Jackson County.

Soon after she became the legal guardian, Curtis received notice from the facility that the person had to move within 30 days because of aggression.

Despite the efforts of the case manager at a regional office of the Missouri Department of Mental Health, nothing was available. Just before Christmas, Curtis got the call informing her that she had just five days left to find a new residential placement.

When the five days passed, the provider took the person to a hospital emergency room.

And that is where they have lived since.

“Our hospitals are not dumping grounds for these individuals but, the hospitals are full of our clients,” Curtis said.

At the beginning of March, there were 650 adults with developmental disabilities in what the Department of Mental Health calls “inappropriate placements.” There are 39 residing in hospitals, plus a handful in jails and homeless shelters, representing the most critical cases impacted by widespread staffing shortages among local non-for-profit organizations.

“This is a major problem,” Curtis said, “and it is not going to be fixed if we all put our head in the sand.”

Two initiatives are underway to fill those vacancies. Associations representing those local agencies have launched a statewide recruitment campaign for direct service employees. And they are asking lawmakers to increase the base wage for those jobs from $15 to $21 an hour, as recommended by a study completed last year.

Continued

Virginia - Measure to Eliminate Sub-Minimum Wage in Va. Moves Another Step Closer

By Scott McCaffrey, Gazette Leader, March 28, 2023

It still has one final procedural hurdle to surmount, but a measure ending an 80-year-old disparity in minimum pay levels for Virginians with disabilities is likely to become law.

The measure, patroned by Del. Patrick Hope (D-Arlington), would end the 1940s-era measure allowing those employing workers with disabilities to pay less than the minimum wage – sometimes as low as $3 per hour.

The measure would impact about 300 people, who under the bill eventually would be paid no less than Virginia’s prevailing minimum wage. It also uses federal funding to reimburse the employers (not more than 20) currently using existing law to pay their workers less than minimum wage.

Current state law authorizing a sub-minimum wage, when enacted decades ago, was seen as a progressive measure, enabling those with disabilities to enter the workforce and be productive. But in recent years it has been viewed as archaic.

Hope’s measure sailed through the Republican-controlled House of Delegates unanimously, but ran into trouble with GOP members in the Democratic state Senate before winning narrow passage on a party-line vote.

Following the brouhaha, Hope worked with Gov. Youngkin’s office to address concerns. As a result, the governor issued a recommendation that employers currently paying less than minimum wage will have until 2030 to make the change.

“I worked with the governor on these amendments to give employers a little extra time to comply,” Hope told the GazetteLeader. “I wanted a ‘date certain’ or a ‘no later than’ date to compel this change.”

Continued

Indiana - Senate Guts Bill to Better Track Direct Support Professional Abuse of People with Disabilities

By Adam Reyes, Indiana Public Media, March 30, 2023

Direct support professionals (DSPs) can provide a critical service to people in Indiana with disabilities by providing in-home and group-setting care. DSPs can be parents or loved ones of the person they’re caring for.

But in some cases, DSPs abuse and neglect those they’re supposed to care for and, advocates say, often get away with it by switching jobs.

House Bill 1342 originally would have created a registry within the Indiana Division of Disability and Rehabilitative Services (DDRS) to better record and track substantiated cases of abuse by DSPs.

“Say a direct support professional is a bad actor, the goal to me is to try to let other providers know and to make substantiated cases of abuse, neglect known,” said Rep. Julie Olthoff (R-Crown Point), the bill’s author. “The whole bill idea came to me from an incident that happened [in my district] and they couldn't prosecute the worker because you can't prove malice. So the mom said, ‘Yeah, OK, I get that.’ But then when she saw that worker down the street on another provider, she was like, ‘wait a second. That's not good. That's not safe. That's not protecting these individuals with disabilities.’”

It sailed through the House with ease, but a Senate committee voted to strip that provision out entirely. The author of the amendment, Sen. Stacey Donato (R-Logansport), also sponsored the Senate bill.

Donato said she was “sad” to be removing the registry portion, but felt it was needed to ensure the remaining part of the bill – which focuses on standardized training for direct support providers – could pass.

Olthoff said the amendment was a response to organizations that employ DSPs fearing the proposed registry would create liability. She attempted a similar bill last year which also failed to get traction.

Continued

Arizona Debates Bill On Guardianship For Developmentally Disabled Kids Who Turn 18

Arizona lawmakers plan to push for changes to a new bill that would educate parents of developmentally disabled children on guardianship options for when their kids turn 18, including less-restrictive alternatives, such as supported decision-making for the young adult, instead of full control.

The move follows talks with disability rights organizations and weeks of revisions to SB1411, which initially stated that a developmentally disabled child who receives services through the state’s Division of Developmental Disabilities (DDD) would immediately and automatically be placed in the guardianship of their parent once they turn 18.

Currently in Arizona, parents instead automatically lose guardianship over their child when they reach 18. The parent would have to petition a family law court to regain guardianship at that point. Guardianship or conservatorships over disabled adults can only be granted by a court if, after the process of interviews and examinations, the court finds the adult to be incapacitated or “unable to make reasoned decisions.”

Sen. Justine Wadsack, the Republican who introduced SB1411 last month, said that the legal process for gaining guardianship is long and costly. Wadsack, who has been open in Senate meetings about her experience as a parent of a disabled child, said that her legislation was meant to make it easier for parents to retain guardianship.

Several disability rights organizations spoke out against this initial version of the legislation. The Arizona Association of People Supporting Employment First (APSE) said in a statement that SB1411 was a “flawed and problematic piece of legislation that undermines the principles of autonomy, agency, and individual choice.”

“By automatically granting guardianship to the primary caregiver of a minor child upon the child’s eighteenth birthday, this bill denies individuals the right to make their own decisions and exercise their own free will,” the organization wrote in the statement.

A group of 19 organizations wrote a letter last month to the state Senate Judiciary Committee stating that the legislation has significant legal implications for disabled people. They added that the bill denies disabled people due process, and presumes that a disabled person is incapacitated. Under Arizona law, a developmentally disabled person is legally competent unless a court determines otherwise through the guardianship process.

Continued

South Carolina - Oversight Committee Recommends State Commission that Oversees DDSN be Dissolved, Re-Established in Governor's Cabinet

By Blair Sabol, WCSC-5 News, March 28, 2023

The senate unanimously voted on a bill that would eliminate the Commission that oversees the Department of Disabilities and Special Needs and re-establish it as part of the governor’s cabinet at the state house Tuesday.

It needs one more reading to pass in the senate.

That bill stems from an oversight committee’s recommendation to do so, after a year and a half long investigation.

The 46-page document published last week is just part one of two. A second and longer portion is expected to be complete by this summer.

In it, the Legislative Audit Council wrote that it found members of the commission had “most likely” violated South Carolina FOIA law multiple times, abused their positions of power, and had recently increased frivolous expenditures of taxpayer money.

The Legislative Audit Council reports that even after receiving training, the commission continued to discuss public matters via email.

Over a year long period, 34 emails were identified as possible meetings where a quorum or all members were involved.

The seven-person commission is also blamed for micro-managing day-to-day functions of the department, overburdening staff and keeping them from getting their jobs done including the commission-appointed director.

The agency has lost two directors in the span of less than two years.

In February 2021, the commission fired Mary Poole for “mishandling a sexual harassment case” which then sparked a wrongful termination lawsuit. This past January, Dr. Michelle Fry resigned after just one year on the job.

At least three commissioners were also accused of leveraging their position to get information and advocate for family members under the care of Department of Disabilities and Special Needs, including Chairman Stephanie Rawlinson and the newest member of the group Michelle Woodhead.

Continued

More information from Statehouse Report

Disability Rights Iowa Looking for New Board Members

By Jay Biggs, We Are Iowa, March 27, 2023

Disability Rights Iowa (DRI) is looking for community members to serve on their Board of Directors.

The nonprofit provides legal representation for Iowans with disabilities.

Individuals interested in applying must be a resident of Iowa with a disability, or have a family member with a disability. Iowans across the state, from every community, are welcome to apply. 

According to DRI, applicants should have an interest in protecting the rights of people with disabilities and other marginalized groups. They should also have a commitment to furthering DRI's mission and values. 

Applications can be submitted online here.

Full article available here

VOR would encourage any Iowans who support ICF care to apply

New Report on Nurse and Homecare Aide Shortage Offers Practical Solutions to Solve the Crisis

Home Care Magazine, March 27, 2023

The United States is facing an unprecedented crisis in developing an adequate workforce of homecare aides and nurses to care for the country’s burgeoning elderly and disabled population. It is estimated that between 2020 and 2030, the number of U.S. citizens 85 years of age or older will double, from the current 2.4 million. Such growth in the U.S. aged population exacerbates the current shortage of caregivers that over 12 million Americans of all ages rely on today. With an annual turnover rate of 64% and Medicaid reimbursement that has not kept pace with wage inflation, the result is that patients must wait for badly-needed care as agencies are forced to delay accepting new cases due to a lack of qualified workers.

“The supply of nurses and homecare aides is not sufficient to meet the demand for their services, which means America’s most vulnerable population suffers,” said NAHC President William A. Dombi. “Family caregivers are already stretched beyond the limit, leading them to take unpaid leave, lose wages and suffer from care burnout. This also leads people to seek care from costlier settings, such as hospitals and nursing homes. The homecare workforce crisis has implications far beyond the care at home community.”

The National Association for Home Care & Hospice (NAHC) and the Home Care Association of America (HCAOA) have brought together industry leaders to create The Home Care Workforce Crisis: An Industry Report and Call to Action. This initiative not only addresses the needs of the nursing and homecare aide workforce but also the supply and demand issues for home-based care. This report, told from the perspective of the people on the front lines of this crisis, offers policy recommendations and operational best practices to address the workforce shortage in home-based care.

“This report is just the first step to addressing the homecare workforce shortage, but it is a significant one,” said Vicki Hoak, CEO of the Home Care Association of America. “It encapsulates the industry’s commitment to elevating the profession of caregiving and urges other stakeholders and policymakers to join us in solving this problem. This week home care providers from both of our associations will be on Capitol Hill meeting with lawmakers to tell their personal stories of the impact this shortage has on families. As the preferred choice of care for older Americans, homecare is a lifeline for millions of families with elderly loved ones. But today they are struggling to find the care and support they need. We must continue to stress the urgency of addressing this shortage to meet the massive demand for home-based care from America’s growing aging population by creating a stronger safety net and enabling all Americans to age at home with dignity and respect.”

Leaders from across the homecare spectrum came together over the last year to conduct a deep dive assessment of the challenges and possible solutions to the current homecare workforce crisis. The charge was to create a solutions-focused document that:

• Reflects the homecare industry’s response to the workforce shortage.
• Presents recommendations to multiple audiences, including policymakers, elected officials, educators and members of national trade associations.
• Quantifies and validates the workforce shortage and commits to making the welfare of DCWs and nurses a top priority of home care employers.
• Commits to promoting tangible and concrete steps to mitigate the workforce shortage so that all Americans have access to the most preferred health care delivery—in one’s own home.
• Understands and is responsive to the needs of health and long-term care delivery systems in terms of avoidance of costly hospital and nursing home stays and respect for individual choice of care setting.

Continued

'We Are Their Family': Caregiver Shortage Affects those with Intellectual and Developmental Disabilities 

By Anthony Hill, ABC News Pinellas Region, March 30, 2023

For many people with intellectual and developmental disabilities, having a dedicated and trained caregiver is the only way they can live outside of an institution, but there’s a national shortage of caregivers and we’re feeling the effects right here in the Tampa Bay area.

“You don’t know what you’re walking into when you walk into work. I promise you, my Monday is never like my Tuesday; my Tuesday is never like my Wednesday,” said Alisia Stevens, a Direct Support Professional at the Arc Tampa Bay.

Direct Support Professionals care for those with intellectual and developmental disabilities.

Stevens is passionate about the job she does.

“I just feel like it just takes heart. You got to love what you do to do it. You got to love to care about a person,” said Stevens.

Although Stevens excels in her position, the job is far from easy.

“Some of them don’t have no family. So, we are their family. We are the ones who love them."

Without the help of Direct Support Professionals, many people with intellectual and developmental disabilities would be institutionalized, but because of people like Stevens, they’re able to live in the community.

“The relationship with the staff, they are very nice to me. They care,” said Brigit Harold.

“These are some of the group homes that we were talking about. They serve anywhere from six individuals to upwards of 10,” said Brian Siracusa, executive director of the Arc Tampa Bay.

The group provides 16 adult group homes to those with disabilities in Pinellas County. The shortage of caregivers to work those homes forced them to close one down last year. He said because of that; there are currently people with developmental disabilities in psych wards when they shouldn’t have to be.

“It’s sad for us because we’d love to reopen the home. We’d love to be able to provide that service, but without the staff, we can’t do that,” said Siracusa.

The shortage is so severe that in Florida alone, there are more than 10,000 people with disabilities on the waitlist for services, which means they also face being put into a nursing home or psychiatric hospital if they can’t get the care they need at home.

The turnover rate last year at the Arc Tampa Bay was 30%, which is why they’re currently looking to hire and train people to become Direct Professional Support workers.

Some of the reasons for the DSP worker shortage are low pay, stressful work environment and the pandemic. 

Continued

Illinois - Families Affected by Lack of Nurses Willing to Care for Children in Homes

By Ted Slowik, The Chicago Tribune, March 23, 2023

Red tape is wasting taxpayer dollars and disrupting lives of families with medically fragile children in the south and southwest suburbs and elsewhere.

There is a critical shortage of pediatric nurses willing to work for low wages paid by agencies that serve families with children who need ventilators, feeding tubes and other types of equipment and care to survive.

“We have clients who live in the Orland Park area who are having trouble getting nursing,” said Kathy Logan, co-owner of BrightStar Care Orland Park/Will County.

Agencies are doing their best to hire nurses. But a bureaucracy that involves Medicaid waivers means most nurses are choosing to work for hospitals or other employers that can pay much more than home-care providers.

“For us to break even we can’t pay the nurse more than $29 an hour,” Logan said. “Nobody is accepting this. Nurses are making $45 an hour or more.”

Since there aren’t enough nurses at agencies that provide care in homes, many children remain at hospitals or other institutions where the costs of daily care are much greater. In some cases, parents undergo training to become caregivers and quit their jobs to look after their children full-time at home.

Many children with chronic conditions remain at institutions much longer than they should. Some children wait more than a year to come home due to the nursing shortage, Logan said.

Area families are begging for service, but agencies such as BrightStar Care are unable to take on new clients because they lack nurses to serve them, Logan said. Logan and her husband, Jim, founded the Orland Park/Will County franchise of BrightStar about 20 years ago.

Continued

Illinois - Murphy’s Measure to Address Gap in Disability Specialist Workforce Passes  

Illinois Senate Democrats, March 27, 2023

To address the growing need for direct support professionals, State Senator Laura Murphy passed legislation to provide college students with hands-on training and experience in the field.

“Direct Support Professionals help disabled individuals realize their full potential, that is why it is vital to help remove barriers to entering the workforce,” said Murphy (D-Des Plaines). “The pandemic exacerbated the shortage of disability staff members, and we need to develop programs that help students get the experience they need to enter this workforce.”

Through this legislation, the Illinois Community College Board would be required to create a model program of study for college students to receive class credit that incorporates the training and experience necessary to serve as direct support professionals. If adopted, the program would begin in the 2026-2027 academic year.

According to a 2022 survey of Illinois Association of Rehabilitation Facilities members, 28% of providers are unable to accept new patients and 72% of providers have delayed service expansion due to staffing shortages.

“Hands-on training will provide college students with the experience they need to feel confident when they enter the workforce,” Murphy said. “Working as a Direct Support Professional is a truly rewarding experience as they allow our disabled population to engage with their community.”

Continued

While VOR supports efforts to better educate and train Direct Support Professionals, we have concerns that few graduates from this program may be willing to enter the field if the state fails to address the low wages and lack of career advancement opportunities for DSPs.

Below are two interesting articles that should provide a good overview of where our family's issues fit into the political landscape.

KFF Health Tracking Poll March 2023: Public Doesn't Want Politicians To Upend Popular Programs

By Ashley Kirzinger, Marley Presiado, Isabelle Valdes, and Mollyann Brodie Kaiser Family Foundation, March 30, 2023 

The political debate around health care is once again focused on the future of the government health insurance programs and entitlement programs. On February 7, 2023, President Biden placed the future of Social Security and Medicare, the federal government’s two largest entitlement programs back into the political limelight with his State of the Union address. Since then, Republican lawmakers have vehemently denied they wanted to make cuts to the programs, but Republican lawmakers have not made the same claims about Medicaid, the government health insurance program for low-income adults, and many assume the program will be the focus of Republican cuts during upcoming budget debates.

The latest KFF Health Tracking Poll finds all four programs: Social Security, Medicare, Medicaid, and the ACA are viewed positively by a majority of U.S. adults.

Read the full article here

Opinion: The powerful lesson from 18 million workers getting a pay raise over $15

By Heather Long, The Washington Post, March 26, 2023

The Fight for $15 minimum wage movement might soon need a rebrand. Thanks largely to the strong job market, the number of American workers earning less than $15 has been cut nearly in half in the past three years, from 39 million pre-pandemic to 20.6 million at the end of 2022. It’s a rapid and long overdue shift in how American society values low-wage workers.

The data come from Ben Zipperer, an economist at the Economic Policy Institute who runs the tracker “How many low-wage workers are in the U.S.?” Before the pandemic, fast-food workers, home health aides, janitors and other low-wage workers saw modest pay increases largely due to 30 states raising their state minimum wages above the $7.25-an-hour federal requirement, Zipperer says. But circumstances changed dramatically during the pandemic. The swift economic rebound and the great reassessment of work triggered something almost no one anticipated: a tight labor market. Many low-wage workers, in particular, realized they could trade up to better jobs with higher pay and more flexibility.

Workers have been slow to return to notoriously low-paid jobs in restaurants, hotels, day cares, retail stores and home health-care services. Even when companies can find people, holding on to them is a challenge. Workers are still quitting jobs in hospitality and retail at far higher rates than before the pandemic. Social media is helping spread news that better-paying jobs exist in warehouses, construction and remote office work.

Job seekers increasingly don’t even search for jobs that pay less than $20 per hour. Companies have been forced to respond. Nearly half of workers (who weren’t self-employed) earned under $20 an hour in 2019. That has fallen to just over one-third of workers, according to Zipperer. To put it another way, nearly 16 million Americans have been lifted above the $20-an-hour threshold since the pandemic began.

Continued

If you have written a book about your own experiences with navigating the DD System to help a loved one with I/DD or autism, please contact us at info@vor.net. We will be adding a page to our website to feature our members' works. We will not be posting them in the newsletter in the future, but this week, we would like to provide links to two good reads that should be on your bookshelf.

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

VOR SUPPORTS:

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.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.

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.

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.

VOR supports increasing funding for people with I/DD, but we have concerns that this bill, in its 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 click on blue link to view information about the bill]

VOR SUPPORTS:

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.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.

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.

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.

VOR supports increasing funding for people with I/DD, but we have concerns that this bill, in its 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.

Planned Giving

As we approach the mid-April tax season, we ask that our members consider making a donation to VOR as a way to ease your tax burden while supporting our mission to advocate for individuals with I/DD and autism.

• For information on various forms of planned giving, including making a charitable contribution using the Required Minimum Distribution from your IRA, making gifts of securities, or making legacy contributions through your life insurance policy, please click here.

• For information on the lasting impact of a will bequest, please click here.

As always, we suggest you consult with your policy administrators and tax professionals to determine how best to contribute.

Back Issues of VOR's Weekly Newsletter are available on our web site.

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