May 19, 2023

Coming in June!

Please Prepare Your State Reports For

VOR's 40th Anniversary Annual Meeting

June 11, 2023 - 11:30 am - 5:30 pm (Eastern)

This Year's Schedule:

11:30 am - Open meeting of the VOR Board of Directors

Reports from our President and Committee Chairs

Moderated by VOR President Joanne St. Amand &

Executive Director Hugo Dwyer

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This Year's Guest Speakers:

12:30 pm - Congressman Glenn Grothman - (R-WI)

Rep. Grothman will speak about two bills he has introduced in Congress, and how to support his efforts to preserve 14(c) employment opportunities

1:30 pm - Rep. Charlie Meier (Illinois General Assembly)

Rep. Meier will speak on the bills he has introduced in the state legislature and how they will improve safety and oversight for people with

I/DD and autism

2:30 pm - Amy S. F. Lutz, PhD.

Dr. Lutz will share with us her experiences with Severe Autism, both personal and professional, and give us an advanced peek at her new book:

Chasing the Intact Mind

How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most

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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.

3:30 - 5:30 - Reports from the States

VOR Members share news about the state of their state

Moderated by Roslyn Leehey

Those wishing to participate may submit their State Reports to

[email protected]

Please Click Here to Register

This event is open to all.

You do not need to be a member of VOR to attend this meeting.

You do not need to donate to VOR if you would like to attend this meeting.

You don't even have to register to attend this meeting.

But if would make us happy if you were to do so.



The union says the roughly 1,700 workers set to strike at 6 a.m. next Wednesday, “require $400 million in additional Medicaid funding in the state’s biennial budget to lift workers out of poverty with a pathway to $25/hr minimum wage, access to affordable healthcare, and a pension that allows workers to retire after decades of service.”

Baril said half of the $400 million would be covered by federal matching funds.

“We are clear that this is a workforce that is not going to make any progress by relying on benevolent elected officials,” Baril said.

Barry Simon is president and CEO of Oak Hill in Hartford, one of the agencies that would be impacted by the strike. Simon said while it will be difficult to maintain a typical level of care during the work stoppage, he supports his roughly 700 striking workers.

“How much can you take, when you are clearly not valued, clearly not included, and clearly not treated with any kind of equity in the budget process?” Simon said.

“They’ve had enough,”

Read the full article here

Click here for a related story from CT Mirror

New Mexico - Department of Health Issues Statement on the Extreme Case of Abuse and Neglect that Resulted in the Tragic Death of a Disabled Client

New Mexico Department of Health, May 18, 2023

Department of Health Cabinet Secretary Patrick Allen issued a statement following the arrests of Angelita Chacon, Patricia Hurtado, and Luz Scott by New Mexico authorities in the horrendous case of abuse and neglect that resulted in the tragic death of an intellectually disabled client. 

“Many thanks to all of the law enforcement agencies for their due diligence and strong attention to this shocking case of abuse and neglect that we turned over to them,” said Patrick Allen, Secretary for DOH. “The arrest and the allegations levied against Angelita Chacon, Patricia Hurtado, and Luz Scott are unconscionable and constitute the worst breach of trust DOH has ever seen. We will continue to refer any other cases of abuse and neglect to law enforcement for investigation. As the governor stated earlier, ‘if you abuse or neglect those in your care, we are coming for you.’ Any form of abuse, harm or neglect is unacceptable and the rights and safety of the people we support and serve are our highest priorities.” 

Upon learning of this horrific case, DOH took immediate action and terminated agreements with the four providers involved: At Home Advocacy, Inc., Albuquerque; A New Vision Case Management, Corrales; Lynn Barbour, LLC, Albuquerque; Sylvester & Company, Los Ranchos de Albuquerque. 

This shocking case prompted DOH to conduct and complete in-person wellness checks on all individuals being cared for under the state’s Developmental Disabilities Waiver (DD Waiver) programs to ensure they are in good health and being well cared for by providers.

State leadership and the DOH also immediately established what is now an ongoing independent, third-party investigation evaluating both the agency’s Developmental Disabilities Support Division and the Division of Health Improvement procedures to identify systemic flaws that allowed the alleged incidents to occur.

That independent investigation, conducted by German Burnette & Associates in partnership with Accenture, a company that specializes in Medicaid issues, will report its findings to the state and will be shared publicly when completed.

“The Department of Health will use every tool at our disposal to make sure we are doing everything we can to prevent future cases of abuse and neglect of our DD Waiver clients,” said Secretary Allen.

“Persons with disabilities often rely on others for their day-to-day living. They literally entrust their caregivers with their lives. This vulnerable population has inherent difficulty advocating for itself, and are highly dependent on caregivers, often in the caregiver's own home. People with developmental and intellectual disabilities are people who deserve to be treated with the utmost respect and care. When their care is covered by one of the state’s Medicaid funded DD Waiver Programs everyone is accountable, and we must ensure their health and safety needs are met.”

Continued

Virginia to Study Maryland Program after Backlash over Disability Caregiving Change

By Meghan McIntyre, Inside Nova, May 15, 2023

After outcry from hundreds of families and letters from state Democrats, Virginia plans to study whether a Maryland program allowing certain family members to be paid for caregiving services for people with disabilities can be adopted in the commonwealth.

Del. Mark Sickles, D-Arlington, a ranking member of the House Health, Welfare and Institutions Committee, said both Secretary of Health and Human Resources John Littel and Department of Medical Assistance Services Director for Complex Care Services Tammy Whitlock late last week told him DMAS intends to study a federally approved Maryland plan for the provision of care for people with disabilities under certain Medicaid waivers. 

That plan allows the state to directly pay parents of minors with disabilities as well as spouses of people with disabilities to provide caregiving services to their family members. 

A similar option has been available in Virginia since the start of the COVID-19 pandemic, but is set to end this fall because of DMAS concerns that it wouldn’t follow federal guidelines in a post-COVID world and fell short of oversight standards.

Youngkin spokesperson Macaulay Porter confirmed the study is happening.

“Every consumer-directed care program is a little different, but [Health and Human Resources] is always looking for best practices,” she wrote in an email.  

A prior statement from Littel said the administration “remains strongly committed to consumer-directed care and especially to the provision of care by family members.” 

However, he noted, “the federal government requires an extraordinary level of care for these individuals, so minimal training of parent caregivers and regular oversight by a nurse are appropriate ways to better serve these individuals. We will work with [the Centers for Medicare and Medicaid Services] to ensure that our processes are minimally intrusive to these caregivers and are reviewing employment and reimbursement policies of agencies that employ them.”

Continued

As Victoria “Vicky” Gonzalez and her children grow older, so does the concern about what will happen to them once she and her husband pass away.

Vicky reached out to the ‘KGNS On Your Side’ team to inquire about the establishment of a residential facility, where people with severe autism can live an independent lifestyle, in the Laredo/Webb County community.

“This makes it hard really, to enjoy life” Vicky said. “Thinking what’s going to happen to them, and also we want to be able to live in peace and die in peace,” she added.

This fear is something Vicky harbors every day because her two kids depend heavily on her and her husband.

Vicky’s son, Mario, 20, and daughter, Isabella, 16, are both on the autism disorder spectrum and struggle with verbal communication.

According to autism speaks org, an estimated 25% to 30% of people with autism are diagnosed as nonverbal or minimally verbal, which is what Mario and Isabel have.

“In the case of my son,” Vicky said. “He cannot say any words he just will grunt, he will use some signs he learned through therapy. He uses a communication device, but, of course, someone needs to be there to charge it for him, so that’s why they cannot live alone. They need a caretaker, they need a place.”

There are nonprofits and businesses in Laredo and Webb County that provide home health care services, but Vicky said she’s interested in having a facility that could be a long-term residential home for adults with severe autism that has enough space for activities that’ll meet their sensory needs.

Aside from worrying about where her kids will end up, Vicky also questions if they’ll stay together and if the family will visit them.

“Because the ones that don’t get any visitations are usually the ones that get neglected, abused, I mean, it’s very difficult when they cannot speak to express anything, so if they’re here locally people can drop in here or there, occasionally,” Vicky said.

KGNS reached out to some of the top elected officials in the Laredo/Webb County area, and asked, “What would go into a project like this?”

Webb County Judge Tano Tijerina said building facilities like these from the ground up is a challenge but possible. “I think it’s a great idea but it will be very, very difficult,” Judge Tijerina said. “Not to say that it can’t happen,” he added.

City of Laredo Mayor Dr. Victor Trevino said more funds need to be dedicated to our medically underserved community.

“It takes funding agencies, first of all,” Mayor Trevino said. “We also need to have health agencies. We need to get all the areas involved to make a facility like this,” he added.

Lastly, U.S. Rep. Henry Cuellar, D-Texas, who is co-chair of the Congressional Autism Caucus, said the federal government can provide grants to a project like this.

“I can come up with some money that can help either for a construction,” Rep. Cuellar said. “The community needs to tell me this – is where we need to put this earmark,” he added.

It’ll likely take a partnership with a for-profit or not-for-profit organization to get a facility like this created.

All leaders are in favor of this and agree that more public input and interest will be needed to push the needle on this idea.

Recently, Cuellar awarded the City of Laredo Health Department over $2M for the study of autism in our community.

Read the full article here

President Joe Biden and leaders in Congress are working to reach a deal to avert a first-ever government default. Without an agreement, Treasury Secretary Janet Yellen has warned that the U.S. could hit what’s known as the debt ceiling as soon as June 1.

Last month, the Republican-led U.S. House of Representatives passed a bill to raise the country’s debt limit — the amount of money that the government is permitted to borrow. The bill included work requirements for Medicaid beneficiaries and significant cuts to domestic spending, which would affect everything from education to employment, housing and other programs for people with disabilities.

The measure was seen as a nonstarter for Democrats, who control the Senate, but disability advocates say the bill shows what’s at risk in the negotiations to avert a fiscal crisis.

“Given the consequences to the economy, there is enormous pressure to reach an agreement that can pass the House and the Senate,” said David Goldfarb, director of policy at The Arc of the United States. “In addition to Medicaid cuts, I am very concerned about caps to discretionary spending which will hurt people with disabilities. Caps to discretionary spending could mean less funding for accessible housing, less funding for special education, a worsening Social Security Administration customer service crisis, and so much more.”

Continued

Despite Laws, People With IDD Less Likely To Receive Organ Transplants

By Shaun Heasley, Disabilty Scoop, May 16, 2023

New research suggests that people with intellectual and developmental disabilities continue to face more difficulty than others accessing organ transplants even in cases where they are no more likely to have complications.

In a study looking at adults nationwide with end-stage renal disease, researchers found that those with developmental disabilities were 54% less likely to be evaluated for a kidney transplant and 62% less likely to receive one.

At the same time, however, the study published recently in the journal JAMA Surgery, found that individuals with developmental disabilities who received kidney transplants fared similarly to those without such diagnoses.

"There’s a growing demand for organ transplants that outpaces the supply of donor organs, requiring transplant centers to prioritize which patients to put on transplant wait lists,” said Brittany Hand, an assistant professor at The Ohio State University School of Health and Rehabilitation Science and the lead author of the study. “But IDD should not categorically disqualify adults from transplants. Our findings show that despite existing protections, like the Americans with Disabilities Act, people with IDD continue to be discriminated against in the organ transplant process.”

For the study, researchers examined Medicare records for 21,384 adults with end-stage renal disease, including 10,692 with intellectual and developmental disabilities, as well as 1,258 kidney transplant recipients, 629 of whom had IDD. The Medicare files were considered to be comprehensive since people with end-stage renal disease automatically qualify for the government health program.

The findings “underscore the urgent need for antidiscrimination initiatives to promote the receipt of equitable care for this population,” the researchers wrote.

The disparities in transplant access persist despite laws in 34 states barring this type of discrimination, the researchers said, noting that more work is needed to educate medical professionals and improve access.

Continued

Apple Rolls Out Accessibility Features Aimed At Users With Developmental Disabilities

By Shaun Heasley, Disability Scoop, May 17, 2023

Apple is introducing a host of new features to make the iPhone and iPad easier to use for people with cognitive disabilities and those who are nonspeaking.

Software coming later this year will include Assistive Access, which will allow users to “distill apps and experiences to their essential features in order to lighten cognitive load,” the technology giant said this week.

The new functionality means that individuals with disabilities or those supporting them will be able to pare down the home screen or options within an app. For example, users could set the camera on their device to simply display a button that says “take photo” rather than showing options for photo, video and other settings.

Assistive Access also allows apps to be displayed with high contrast buttons and large text labels and gives users the choice of a grid-based or row-based layout.

“The intellectual and developmental disability community is bursting with creativity, but technology often poses physical, visual or knowledge barriers for these individuals,” said Katy Schmid, senior director of national program initiatives at The Arc of the United States. “To have a feature that provides a cognitively accessible experience on iPhone or iPad — that means more open doors to education, employment, safety and autonomy. It means broadening worlds and expanding potential.”

Continued

Our Friends at Together for Choice are presenting an online event:

TFC Community Spotlight - Opportunity Village, Nevada

May 30, 1:00 PM – 2:00 PM EDT

Online Event: TFC Community Spotlight on Opportunity Village, which offers inclusive housing, workforce development, community employment, day services and more to over 3,000 individuals with disabilities in Las Vegas, Nevada.

Click here for more information and to register for the event

"Unwinding" of Policy Changes due to the COVID-19 Pandemic

The Administration for Community Living is offering some useful guidance on protecting your Medicaid eligibility as the Public Health Emergency ends.

Click here for guidance

[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

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) - TTo 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

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.

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.

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

[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.

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.

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]

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

Please Click Here!

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