May 26, 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.



Below is the first of a series of seven stories to be presented by the PBS Newshour entitled "Disability Reframed", hosted by PBS' former Newshour anchor Judy Woodruff. One of the producers of the series, Layla Quran, reached out to several ID/A advocacy groups, including members of the National Council on Severe Autism, VOR, and the Coalition for the Preservation of Employment Choice. Indeed, we spoke for almost two hours with Ms. Quran, providing a broad overview of the DD System from our perspective. They do intend to hold an in-person interview one of our members (also a member of the Coalition for Preservation of Employment Choice), Dawn Kovacovich and her daughter Laura in the near future to discuss the need for sheltered workshops.

While a few of our friends have expressed disappointment that they still denigrate institutions, and that they chose to interview the Arc on camera after all the background we had given them, we feel overall that this can be a good series.

We hope that PBS will not portray only one part of the landscape, HCBS services, and that they will educate the general public about the strengths and weaknesses of the system overall, and emphasize the need for a more robust system of care that can someday better meet the needs of the diverse population it is supposed to serve.

But, as Judy Woodruff report, in the first of several stories on the challenges facing those with disabilities, many families are still waiting for the help they need. It's part of our new series called Disability Reframed.

Click here to continue

(We encourage our supporters to watch the video. The transcript doesn't do it justice)

Illinois - Proposal Gives IL-DHS Watchdog More Power in Abuse and Neglect Investigations

By Mike Miletich, WAND-TV News, May 11, 2023

The Illinois House and Senate have approved a plan giving more power to the Illinois Department of Human Services to properly investigate abuse within facilities for people with developmental disabilities.

Senate Bill 855 will allow the DHS Inspector General to hold employees accountable for witnessing abuse and neglect and choosing to obstruct investigations.

Sponsors believe this change can help break up the code of silence the Inspector General's office has encountered at state operated facilities like the Choate Mental Health and Developmental Center and community group homes.

"The code of silence that does exist puts our most vulnerable at continued risk, but it also creates a really harmful workplace," said Rep. Lindsey LaPointe (D-Chicago). "It's traumatic for workers to go to work every day in a place that is harboring a code of silence."

Rep. Charlie Meier (R-Okawville) thanked LaPointe for allowing Republicans to help work on this plan. Meier noted that there is still progress to be made to prevent abuse within CILAs, but he feels the plan is a great step forward.

A DHS spokesperson told WAND News in March that the agency has a multi-faceted approach to ensuring safety and well-being of the more than 11,000 people residing in community-based group home settings.

Continued

Illinois - Lawmakers and CILA Directors Hope to Oust Group Home Abuse and Neglect Cases

By Marta Berglund, WIFR iTeam News, May 25, 2023

Accusations of physical abuse, claiming a staff member pushed a patient to the ground and then into a chair. Complaints of mental abuse that accuse staff of refusing to let a patient sleep. Allegations of neglect, with claims that a patient suffered seizures when staff didn’t give a resident proper medication.

What do these stories have in common? They are cases, lodged against area community integrated living arrangements (CILAs), investigated and confirmed by Illinois’ Office of the Inspector General (OIG).

CILA homes are, according to the Department of Human Services (DHS), “a living arrangement for adults in a group home, family home or apartment where eight or fewer unrelated adults with developmental disabilities live under supervision of the community developmental services agency.”

Illinois’ 74th District Representative Bradley Fritts represents the Dixon area, which is home to the CILA Kreider Services. He currently co-sponsors House Bill 3545 which would introduce new regulations to state CILAs.

“We’re talking about some of the most vulnerable we have as a community, and we have to protect them,” explains Fritts. He says the proposed legislation would “make sure there’s no repeated instances of abuse or neglect prior to that hire date.”

The bill’s section on background checks would prevent anyone with previous violations from being directly involved with patient care. It requires violations at CILAs to be reported within five days of the incident. It also upgrades instances of battery by CILA staffers to Class 2 felonies.

Kreider Services Executive Director Jeff Stauter says he doesn’t this this bill is necessary; he says where CILAs struggle is with staffing and wages. Staff pay is set by the state.

“The strengths are the people who work here, the people we support, the parents and activists who have built this organization over 70 years,” says Sauter. He adds, “We pay $15.55 as a starting wage, but you may be able to go fast food or a coffee place and make 17 dollars an hour.”

A 2018 audit revealed major issues with how DHS oversees the homes. The report ordered several immediate changes, citing a lack of properly trained CILA staff, timely employee reviews, documented violations and punishments given. This could include revoking a CILAs license if non compliant. It noted changes to federal group home regulation laws were implemented by DHS nearly three and a half years late.

Continued

New Mexico - AG Proposes Stiffer Penalties for Abuse, Neglect of Disabled People After Woman's Death

By Daniel J. Chacon, Santa Fe New Mexican, May 18, 2023

New Mexico Attorney General Raúl Torrez recommended a series of reforms Thursday to a state-run program for children and adults with intellectual and developmental disabilities in response to the death of a 38-year-old disabled woman under a program provider’s care.

Among them are new civil and criminal penalties for companies that contract with the state under the Developmental Disability Waiver program and providers responsible for caring for some of the most vulnerable people in New Mexico.

“Adding additional penalties would fundamentally reorient and refocus their efforts and hopefully encourage them to spend a good deal more on making sure that people like Mary [Melero] are better protected,” Torrez said at a news conference at The Clyde Hotel downtown.

As first reported by The New Mexican, authorities arrested three women Wednesday in connection with Melero’s death.

U.S. Customs and Border Protection agents discovered Melero unresponsive and wrapped in a blanket in the back of a passenger van Feb. 27 after an inspection at the Bridge of the Americas Port of Entry in El Paso.

Her primary caregiver, Angelita Chacon, told authorities she was trying to take Melero to Mexico so she could receive medical treatment for her wounds, which proved to be extensive and required immediate medical care.

“Severely dehydrated and drugged, Melero had numerous open wounds, including chronic bedsores with exposed bone, bruises and lacerations on various parts of her body, and ligature marks consistent with prolonged restraint,” the Attorney General’s Office wrote in a news release.

After Melero was transported to a hospital in El Paso, medical staff determined her wounds were at different stages, suggesting Melero was a victim of chronic abuse. After spending more than a month in the hospital, Melero was removed from life support and died.

Chacon, who has been charged with five criminal counts, including abuse or neglect of a resident resulting in death, worked for At Home Advocacy LLC, an Albuquerque-based business responsible for managing and supervising Melero’s placement in Chacon’s home.

“The folks at the Department of Health, I think, have a genuine concern for the people in this program,” Torrez said. “They simply don’t have the manpower to conduct the kind of regular, routine and detailed inspections that I think are necessary.”

Torrez said the issue comes down to money, adding it was important to have two members of the Legislature — Reps. Liz Thomson, D-Albuquerque, and Kathleen Cates, D-Rio Rancho — attending Thursday’s news conference.

“Last time I checked, I believe the department list was 12 inspectors for a population of nearly 7,000 enrollees,” he said, adding the workers conduct random inspections on only about 10% of DD Waiver clients in any given year.

“I just think it’s a function of what they’re capable of doing with current resources, and I think this criminal case should throw into sharp relief what the stakes are for people like Mary, for others like Mary, because really what I worry about right now is who else is out there,” he said.

Read the full article here

Georgia - Struggle to Provide Housing for Georgians with Developmental Disabilities Remains, Study Says

By Jill Nolan, Georgia Recorder, May 26, 2023

Georgia lacks appropriate housing options for people with intellectual and developmental disabilities, according to a new study.

“The current housing landscape is not working well for people with IDD and their caregivers,” said the report by Georgians for a Healthy Future, which is a nonprofit patient advocacy group.

“Many caregivers and people with IDD find themselves in situations that do not meet their needs or preferences because affordable and accessible housing and living situations are largely unavailable,” the report continued.

There are thought to be about 240,000 Georgians with an intellectual or developmental disability, such as autism spectrum disorder, down syndrome or cerebral palsy – though an accurate population count likely remains elusive.

The report, “Realizing the Promise of Olmstead,” was funded by the Georgia Council on Developmental Disabilities and included an online survey of nearly 1,700 people with disabilities and caregivers across the state.

Olmstead refers to a 1999 U.S. Supreme Court decision, which ruled that the unjustified segregation of people with disabilities violates the Americans with Disabilities Act.

“There is a legal requirement that people with IDD and other mental disabilities be housed in as close to their community setting as they can be,” Whitney Griggs, senior policy manager with Georgians for a Healthy Future, said during a virtual program Thursday.

“We also know that a lack of access to affordable, accessible and sustainable community housing is associated with an increased risk of institutionalization, homelessness and poor health and social outcomes among people with IDD,” Griggs said.

About two-thirds of the survey respondents with a disability said they live in a community-based setting, such as an apartment or single-family home. About 17% said they lived in a group or host home. Others reported living in a medical setting, a nursing home or a school dorm.

A little more than half of the respondents with a disability said they lived with family members, and 44% said they lived either on their own or with roommates. Nearly half said they rented their homes.

About 4% of respondents with a disability – or 51 people – said they were currently experiencing homelessness, which is twice the rate of Georgia’s overall population.

Continued

Colorado - Denver May House 300 Homeless People with Intellectual or Developmental Disabilities

By David Heitz Newsbreak, May 25, 2023

The City and County of Denver wants to get homeless people with intellectual and developmental disabilities, or IDD, off the street and into housing.

The Safety, Education, Housing and Homelessness committee of the City Council awarded a contract Wednesday to Bayaud Enterprises for about $3 million. Bayaud will establish a pilot program aimed at housing 300 people with IDD. The full City Council must still approve the expenditure.

If approved, housing navigators will hit the streets to find people experiencing homelessness who qualify for the program. The city will receive about $24 million in 2023 for its IDDEAS projects. IDDEAS stands for Intellectual and Development Disabilities Equitable Access to Services. The money comes from a tax approved by voters in 2003. Rules govern how it can be spent.

About 20 percent of people experiencing homelessness identify as IDD, according to IDDEAS program manager Jordan Mulholland.

A needs assessment in 2018 determined housing as the most critical need for people with intellectual and developmental disabilities. In 2019, the city hosted a stakeholders forum with more than 40 agencies. The city signed a contract with Rocky Mountain Human Services to provide $464,000 worth of services in 2021 and 2022.

Continued

The people I support have rights and deserve dignity just like everyone reading this. DSPs like me often spend more time with them than anyone else. Many of them have no family in their lives. DSPs must cultivate a relationship with the people they support so there can be faith and safety in that relationship. They absolutely must trust and have great affection and respect for their DSPs, even as the DSP must trust, love, and respect them as the human beings they are.

As a DSP, I could never have survived without the love and support of my own family. Even though my time with them is affected greatly by my job, they are totally supportive because they know what I do is life-changing and that I love what I do.

I implore others to join me in asking our legislators to grasp the urgency of this situation. The future of the ID/A community hangs in the balance. Young workers are deterred from entering this field due to the meager wages. My education could help me get a different job, yet I choose to remain a DSP because of my unwavering belief in the potential of people with ID/A.

Today, I ask you to help me challenge our state legislators to consider the impact they can make on the lives of so many of our neighbors and family members. DSPs are the unsung heroes who bring light and hope to people to people with intellectual disability/autism and their families. We deserve better, and so do the people we support.

Veronica Young, who began her career as a direct support professional in 1979, works at Emmaus Community of Pittsburgh serving adults in community-based residential homes.

Click here to link to the article

The state amassed a $4.3 billion surplus last fiscal year equal to roughly one-fifth of the General Fund and is on pace to finish $2.95 billion in the black this June 30, which would be the second-largest fiscal cushion in state history.

Meanwhile, high inflation and the coronavirus pandemic have weakened many programs that already had been strained throughout the 2000s and 2010s as a sluggish economy took its toll on many core programs.

The CT Community Nonprofit Alliance, which represents 300 community-based agencies, says the annual payments the industry gets from the state effectively are down $480 million from 2007 levels, after being adjusted for inflation.

And while the industry received a $330 million funding bump from the state across this fiscal year and last, the alliance said inflation and other factors that drove up costs wiped all of that out and then some.

More than 1,700 workers, who care for more than 1,500 disabled clients, are seeking better wages and benefits.

“Wages and benefits in this sector have been stagnating for 15 years,” union President Rob Baril said. “It is a crime and a shame that human services workers, health care workers whose services are publicly funded, and yet our wages are insufficient to keep us out of poverty. All of the money for the wages and the services we provide comes from our state budget. It’s a shame that caregivers who are working full time are facing evictions, living in their cars, working two jobs and carrying thousands of dollars in medical debt. The state has billions in surplus money to end poverty for caregivers for individuals with disabilities.”

The state has said this is a problem for the union and nonprofit businesses to solve.

Read the full article here

Watch local TV coverage from NBC News here

Massachusetts - Service Providers for People with Disabilities say Proposed Pay Hike is Still Too Low   

By Alden Bourne, New England Public Media, via CT Public Radio, May 22, 2023

Massachusetts non-profits that provide services to those with intellectual and developmental disabilities say a proposed increase in pay from the state falls short.

The Healey administration is planning on modest jumps in reimbursement for day programs which include job readiness and recreation.

Entry-level workers for the programs would make $19 an hour and some managers about $24 per hour.

During a hearing Friday, Sharon Smith said it's not enough. Smith leads Work Incorporated, which helps adults with disabilities in eastern and central Massachusetts.

"We are competing and losing employees and candidates to the private sector and to state jobs," Smith said. "In just the past few months, Work, Inc., has lost five managers to state positions earning far higher salaries for essentially the same work."

Continued

I Love Working With People With Disabilities, But Lack of Federal Funds Makes My Job Harder

By Monique St. Claire, Common Dreams, May 26, 2023

 I was teaching a class on personal finance to my students with disabilities when I read the story about the ant and the grasshopper. While the ant was busy putting food away for the winter, the grasshopper laid out to enjoy the beautiful day. Finally, when winter arrived, the ant had plenty to eat, but the grasshopper was starving.

I asked my students why the grasshopper wasn't prepared and, much to my enjoyment, one of my students responded, "He didn't have a calendar, so he didn't know winter was coming."

I work as a Direct Support Professional, or DSP, at Community Access Unlimited in New Jersey, where I provide daily care and support to people with disabilities in my community. When I'm not working as a DSP for individuals, I also serve as an Education Specialist for Community Access Unlimited's Academy for Continuing Education (ACE), teaching and inspiring adults with disabilities on a range of topics, from personal finance to the visual arts. I cherish my work. But it's not easy, and it's only getting harder. 

Just like the ant and the grasshopper, Congress needs to plan for  the future. That means passing home-and community-based services funding before our system completely collapses.

 For decades, and even more so since the pandemic, DSPs like me have been dealing with rampant understaffing and high turnover, due in large part to the nationwide funding crisis for caregivers.

Providers like Community Access Unlimited rely on Medicaid reimbursement rates to pay their DSPs, and these rates have been stagnant for years. As a result, providers can't pay their workers living wages—the national average wage for a DSP is just $13.36 per hour—driving DSPs to companies like Target and McDonald's that have more consistent hours and don't rely on rates set by the government to pay their employees. The end result: Providers, dealing with rampant understaffing, are forced to shut down essential services or even close their doors completely.

The funding crisis holding DSP wages down is so dire that some states are considering radical solutions, like eliminating income taxes for DSPs in order to help them keep more earnings in their pockets. 

Continued

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

[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) - 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

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

TRep. 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 

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 the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.



Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

[email protected]

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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]

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