March 10, 2023

Save the dates!

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.

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

Time - To Be Announced

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.

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

Time - To Be Announced

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.

As in past years, we hope to have three (or more) speakers at the event. They will be announced in the coming weeks.

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.

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Stay tuned for more details,

and please consider helping by contributing as a sponsor

for any of these events.

March is

National Developmental Disabilities Awareness Month

We urge our readers to take 20 minutes to watch this short video, featuring Murray Center mom Peggy Strong and members of two Illinois law enforcement agencies, and Illinois State Rep. Charlie Meier introducing three bills to improve the safety of individuals with I/DD and autism in Illinois' CILA (group home) system.

Click here to watch the video on YouTube

Click here to view Rep. Meier's Bills:

HB 1298

HB 2998

HB 3545

But faced with public prosecutions and other evidence the administration had, Pritzker was asked why he didn't intervene sooner.

“When people are being charged, when they’re being held accountable, it’s clear that there’s an enormous amount that needs to be done. And even before that, we had been starting to do that work,” Pritzker said. “Big transformational planning had been underway, but this is not something you can snap your fingers and fix it. You can hold people accountable. You can arrest people who are breaking the law, and that’s been done. Now the question is how do you change fundamentally the way that (state-run centers) and Choate are operating and treating their people going forward?”

The Department of Human Services, which runs Choate, has named Ryan Thomas to the new position of chief resident safety officer to monitor conduct and conditions in the state's developmental centers. Thomas previously was Human Services' operations program manager, overseeing quality, safety and health care. Her duties included care of 2,000 asylum seekers bused last fall from the Mexican border to Chicago.

The Human Services Department will also add 10 investigators to the staff of the agency's inspector general.

Pritzker stressed that he is not closing Choate. No one, including administrators, has been dismissed from employment and no layoffs were mentioned. Roberta Lynch, executive director of the American Federation of State, County and Municipal Employees Council 31, which represents Choate employees, said in a statement that AFSCME will “protect the jobs of Choate’s dedicated and compassionate employees, and our union will continue our close alliance with the Friends of Choate family group to ensure that no resident is forced out of their home without their consent.”

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New Mexico - ‘Family Voice’ Must Be Heard in Crafting Bills for Vulnerable Adults

By New Mexico Family Guardianship Conservatorship Coalition, Rio Rancho Observer, March 8, 2023

Three bills pertaining to vulnerable adults have been presented in the 2023 Legislative Session. They are: SB 89 (Supported Decision-Making) sponsored by Sen. Hemphill, Sen. Lopez and Rep. Ferrary. Another is SB 118 (Financial Crimes Relating to Vulnerable Adults) sponsored by Sen.r Padilla, Sen. Wirth and Rep. Matthews. The last one is SB 119 (Financial Exploitation Act) sponsored by Sen. Duhigg, Sen. Wirth and Rep. Chandler.

One common thread in all three bills is that the “family voice” was not consulted when legislators crafted these three bills. Various state agencies responded with their comments in the bill analysis; however, the New Mexico Family Guardianship Conservatorship Coalition (NMFGC Coalition) as well as NAMI (National Alliance on Mental Illness) were not given the opportunity to contribute ideas and valuable information in the crafting of these bills.

In 2021, a yearlong task force was created to research “best practices” regarding Supported Decision-Making as an alternative to court-appointed guardianship. The task force had no family members from NMFG Coalition or NAMI present to contribute to the development of SB 89. Many of our coalition members have experienced horrific events within the current guardianship system that legislators must learn about. The coalition and NAMI could have shared valuable research information regarding “best practices” for Supported Decision-Making.

Alice Liu McCoy, executive director of the DDC-OOG, has been a champion advocating for the vulnerable individuals in New Mexico. We commend her for her dedication to helping those individuals who are vulnerable. We continue to request that a few “family members” from our coalition and NAMI be present at the “decision- making” table when any future committees are formed to create new rules and legislation for all vulnerable New Mexicans.

The WINGS Committee created by the Supreme Court as a result of HB 234 is another place where the “family voice” is not utilized in any decision-making regarding vulnerable New Mexicans. Yes, they allow the public to submit written comments; however, the questions asked in the written comments are never answered. Public comments are also allowed via a Zoom call; however, there’s no feedback from any members of the WINGS Committee. According to the WINGS coordinator, the WINGS Committee is not bound to answer questions or provide feedback to the public.

The “family voice” must be included in any crafting of bills related to vulnerable adults. Families know and understand the needs, wants, hopes and dreams of the vulnerable adult. Families are aware of medical and personal information. The family unit is critical in providing information on experiences within the court system.

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Indiana - Senate Considers Bill to Create Standard Training, Abuse Tracking for Indiana Disability Caregivers

By Adam Yahya Rayes, WFYI / IPB News, March 8, 2023

Indiana representatives unanimously voted to pass House Bill 1342 last month to create a registry to track direct support professionals who help care for people with disabilities in their homes. That can include direct family members of those receiving care, who are often paid by the state for that work. But the Senate is set to make some changes to the bill.

The bill House lawmakers passed would require all direct support professionals (DSPs), including those only caring for their own family members, to be registered with the state. The state would use that registry to track substantiated allegations of abuse.

The Arc of Indiana is a disability support organization that works with providers that hire DSPs. Public affairs director Hannah Carlock testified the bill is an important step toward protecting people who receive care.

“A constituent that had an issue where a [direct service provider] was reported and that DSP moved on to a different provider,” Carlock said. “And when that constituent changed providers, they ran into that same DSP again. So we want to have the best quality DSPs to take care of our loved ones.”

The state’s nonpartisan Legislative Services Agency estimated the personnel needed to create and maintain this registry could cost the state as much as $93,000.

The Senate Health and Provider Services Committee is poised to nix the proposed registry in favor of expanding an existing incident reporting system.

 The House-passed version of the bill would also create a standard training curriculum and tiered certification for these providers.

“According to [the Legislative Services Agency] there are about 38,000 home health care and personal care aides in Indiana with an hourly rate of $12.46,” Olthoff said. “The training is meant to raise the profession and provide a career path with the hopes of keeping people happier and longer in their profession.”

Some senators questioned the necessity of that training given the low wages many DSPs earn, especially for family members.

Read the full article here

California, "There You Go Again — Fixing Something That Should Be Left Alone

Opinion by Garth Stapley, The Modesto Bee, March 2, 2023

A California law meant to lift disabled workers could end up hurting them.

The premise of Senate Bill 639, which by 2025 will phase out so-called sheltered workshops, is noble: All people have a right to minimum wage and must not be exploited.

It’s a worthwhile aim in theory. But it’s a lot more complicated in practice.

That was evident in a visit to Howard Prep, Modesto’s premier nonprofit employer of the disabled for more than 60 years, formerly known as the Howard Training Center. Its kitchen and warehouse hum with happy, busy, productive workers making subminimum wages.

Bustling between huge sinks and drying racks was DJ Yarbrough. He started 18 years ago, when California’s minimum wage was $6.75 an hour, and he was paid $2. No one — not his parents, not his employer, not even DJ — considered that disrespectful. Everyone saw him walk a little taller. He had gained purpose, friends and a paycheck.

DJ, 40, has Fragile X syndrome, which causes intellectual disability. He is kind and has a great memory, while he’s not good with stress, public transportation or money. He would rather have five $1 bills than two $20 bills, for example.

But boy, can he wash dishes.

The 4,000-square-foot commercial kitchen at Howard Prep provides a sense of self-worth more than income. The sheltered workshop is a big, big part of DJ’s life.

“It’s the same to him if he makes $1 an hour or $7.50 an hour,” said his father, David. “He doesn’t care. He doesn’t need to bring home any money. He needs to be happy.”

Ashley Montez, 30, says she’s over the moon cooking and baking on the other side of the kitchen at Howard Prep. Thirty disabled workers like her churn out three meals a day for four mental health facilities.

“I’m a very hard worker,” Ashley said. “I do whatever my job coach wants. No arguments from me! I love coming to see all my coworkers. It’s like a big family.”

In the adjacent warehouse, workers cut zippers and install pulls for body bags used in coroner offices. Others remove crooked labels from wine bottles for local wineries. On other lines, workers — some, in wheelchairs — affix reflective material to highway markers, or sort linen going to a thrift store that benefits a local hospice.

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change represented only about a half day on average across the three therapy disciplines, reported Sarah M. Berry, MD, MPH and colleagues. This amounts to an approximate 10% reduction from prepandemic levels, the study authors noted.

The decrease in therapy may be explained in part by the drop in group therapy during the pandemic, they added. 

A ‘remarkable’ feat

The modest level of decline in rehabilitation intensity and community discharge during the pandemic was “remarkable” considering that high staff turnover left fewer staff to care for sicker residents, the authors wrote.

The results show the resiliency and adaptability of the skilled nursing sector during this difficult time, they concluded.

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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.

[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.

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.



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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