March 17, 2023

March is

National Developmental Disabilities Awareness Month



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. To register, please email us at [email protected]

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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.

Registration will open soon. You must be a current member or VOR to participate.

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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 soon.

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Please consider supporting our advocacy by contributing as a

sponsor for any of these events.

Follow up article from last week's newsletter.

We again encourage our members to watch this video.

Illinois State Rep. Charlie Meier, Murray Center mom Peggy Strong, and members of two Illinois law enforcement agencies introduce 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

Illinois - Lawmaker Says State Must Provide Better Group Home Care

By Andrew Hensel, Illinois Radio Network

An Illinois lawmaker is looking to pass measures to address ongoing issues at group homes for those with disabilities.

A Community Integrated Living Arrangement is a group home where eight or fewer unrelated adults with developmental disabilities live under the supervision of the community developmental services agency.

State Rep. Charlie Meier, R-Okawville, shared examples of problems at some of these facilities.

"You have heard from the first responders about the incidents of rape, sexual abuse, the neglect of residents, and even starvations that we can document in the state of Illinois that have taken place in CILAs," Meier said.

Last week, there was a sexual assault at one of the facilities, which Meier said could have been prevented. "That rape, that sexual assault, the incident that happened last week, none of that would have happened if somebody in [the Illinois Department of Human Services] would have listened to us," Meier said.

Meier introduced several measures which he hopes to pass in the coming weeks. One would implement mandatory inspections to be made by DHS.

"House Bill 1298 requires the Department of Human Services to establish a system of sight inspections. Once again, I want to say unannounced," Meier said. "Right now, once every three years CILAs are inspected."

Meier also hopes to install cameras and security equipment in these facilities to deter misconduct.

"The second bill is [House Bill 2998], which will require authorized video surveillance in common areas," Meier said. "Before the video surveillance equipment is installed or operated in the common areas of a state-operated development center, DHS must obtain unanimous consent from the resident or their guardian."

The third measure proposed by Meier would require the facilities to notify the state of any violations within five days.

Continued

Counterpoint: Some with Disabilities would be Harmed by Minimum-Wage Changes Proposed in Minnesota

By Donna Hanbery, Op-Ed from the StarTribune, March 14, 2023

The Star Tribune has been a cheerleader and advocate for a law that would end sub-minimum wages for Minnesotans with disabilities. The paper's coverage, like the March 13 front page story "Higher expectations," has featured people with disabilities who are able to perform jobs earning standard wages, as success stories. There is no mention of the "not so abled" that the law would leave behind.

The article reports that sheltered workshops "took advantage" of a loophole in the federal minimum wage law and exploited people with disabilities doing work where they are "stuck" in menial jobs, such as sorting garbage or packing boxes, and are paid in line with productivity.

The newspaper and disability advocates are championing a bill that would close all sheltered workshops as "outdated and discriminatory."

This coverage does not mention beneficiaries of these programs who will never be able to qualify for work outside of a highly structured, "sheltered" workshop environment.

I have a nephew with Angelman syndrome, a serious genetic disability. He is nonverbal and requires 24/7 care. But he is highly social. He loves being around "his people." If supervised and motivated, he can perform some of those "menial" tasks. Sheltered workshop environments gave him an opportunity to interact with others and to enjoy the benefits of meaningful work that suited his abilities. His work provided him social interactions with others of varying skills.

I don't know the number of people who will forever lose such opportunities to get out of the house and to work in a safe and structured environment. For my nephew and his parents, it was never about the money. He made only $70 one year. His parents put the money in his "fun money pouch." He knew it was money he had earned. His parents helped him spend it on fun activities.

The highly supervised work structure helped him be more responsive when he was with his personal care attendant. The program saved his parents thousands of dollars in paid professional care.

Between COVID and the closing of the few remaining work programs, my nephew now has few opportunities to get out of the house and be in society. The structured workshops had kind staff who labored diligently to provide individuals with serious disabilities some of the joys and rewards of work.

When everyone at the Star Tribune is finished patting one another on the back for supporting the law that would abolish these sheltered workshops, I would urge them to talk to some of the family members and program participants who will not benefit from the closing of these facilities. These families won't be celebrating the new law as a victory for the "not so able." The new law trades more isolation and no opportunities for some for minimum wage for others.

Continued

New Mexico - Department of Health Terminates Agreements with Four Providers Delivering Services to People on the Developmental Disabilities Waiver

Press Release, New Mexico Department of Health, March 10, 2023

The New Mexico Department of Health has terminated its agreements with four providers who deliver services to 708 individuals on the developmental disabilities waiver and is investigating allegations of misconduct that resulted in severe and life-threatening injuries to a client. The providers include: 

• At Home Advocacy, Inc., Albuquerque
• A New Vision Case Management, Corrales
• Lynn Barbour, LLC, Albuquerque
• Sylvester & Company, Los Ranchos de Albuquerque 
• 
  

“The egregious failure by these agencies to ensure the wellbeing of our disabled clients warranted immediate action to safeguard residents,” said Department of Health Cabinet Secretary Patrick M Allen. “Anyone charged with protecting the most vulnerable New Mexicans is held to the highest standard, and we will hold anyone that abuses that responsibility to full account.” 

All direct care personnel allegedly involved in this case are no longer working with clients. The Department of Health and law enforcement agencies are currently investigating these providers. The above providers are required to transition all clients receiving services to other provider agencies no later than April 30, 2023. In the interim, the DOH Developmental Disabilities Supports Division will conduct face-to-face visits with the family living clients every week until they are fully transitioned to new providers, in addition to monitoring the case management transitions until every individual is settled with a new team.  

“We are doing all we can to help ease the disruption and distress caused to residents and their families as we transition them to new providers,” said Sec. Allen. 

Click here for more information

Oregon Group Home Workers Say Understaffing has led to Unsafe Conditions, Burnout

By Ben Botkin, The Oregonian, March. 13, 2023

Paula Burlington has scars on her wrist from teeth bite marks. She also has a shoulder injury that will need surgery.

Burlington has endured those injuries through her work for the Oregon Department of Human Services at a residential group home program in Lebanon.

Burlington is one of more than 600 employees who work for the Oregon Department of Human Services’ Stabilization and Crisis Unit. The 24-hour residential program serves up to 95 people in 20 group homes that stretch from Eugene to Portland. Residents have intellectual and developmental disabilities, often combined with mental health issues that require close supervision and sometimes more than one-on-one care.

Their demanding workload has led to employee burnout and overwork. High staff shortages, mandatory overtime and double shifts are the norm, not the exception, data and interviews with state agency employees show.

They tend to some of Oregon’s most vulnerable people in myriad ways: cooking their meals, helping them get dressed, comforting them in the midst of crises and taking them for field trips and medical appointments.

They also toil in obscurity. The group homes, usually with about five residents each, don’t attract the same attention in the statehouse as larger, high-profile facilities like Oregon State Hospital, the state’s psychiatric hospital.

Their work is just as important, they say, and the system is breaking.

Workers say they’re exhausted and risk jeopardizing the safety of themselves and residents.

Others have headed for the exits.

The vacancy rate for staff who care for residents has grown. The vacancy rate was 6.7% in July 2021, which rose to 13.3% by August 2022, according to statistics the union compiled. That 13.3% vacancy rate dropped to 10.9% in February, but only because one group home closed and its open positions are no longer factored into the rate.

Continued

Pennsylvania - Lack of Workers, Funding Jeopardize Day Programs for People with Autism, Intellectual Disabilities

By Renatta Signorini, Trib Live, March 14, 2023

Marjorie Bungard is one of the lucky ones.

Her days at Community Living Care’s New Florence program mean regular socialization, an exercise routine and stops at the grocery store. Last week, she made a St. Patrick’s Day craft.

“This is where most of my friends are,” she said.

There are five people on a waiting list — hoping to get into the day program for people with autism and intellectual disabilities — if the agency can increase its workforce of direct support professionals. That has proved difficult, said Jason McIntosh, chief administrative officer for the agency and director of the New Florence facility.

Before covid, there were 19 people who attended the program. Now, there are nine, he said. The number of direct support professionals has dropped from eight to four.

Advocates say they need more money from the state — the only source of funding for such agencies — to increase wages in an effort to adequately provide services such as the day program and residential group homes.

When Bungard doesn’t have access to the New Florence program, she is bored.

“She is a very social woman, and when she was not able to be here, she would get very depressed,” said Alice Leighton, her sister.

Providers of those services are facing a crisis: A dearth of direct support professionals means people who have funding to attend day programs or live in group homes may be placed on waiting lists or left with little choice in their day-to-day lives, advocates say. It’s an issue that can have a ripple effect for them and their families while negatively affecting a person’s ability to develop, connect socially and work.

“We are very concerned that our system is falling apart in front of our eyes,” said Mark Davis, president and CEO of Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities. “We see contractions in every sector of our system, and we see people not being able to access services that are critical supports to them, either not as often or not at all.

“We’ve seen a growing issue with what we call a ‘hidden waiting list’ — that means people have funding for services but are unable to obtain services.”

Continued

Georgia's Disability Community Worries Lack of Services is Driving Desperate Acts

By Katherine Landergan and Jeremy Redmon, The Atlanta Journal-Constitution, March 11, 2023

 In early January, workers at a nonprofit that cares for disabled Georgians were stunned to learn that one of their former clients was killed in a suspected murder-suicide.

It wasn’t just that police believe Megan Frix, 26, was killed by her father. But she was the second client of Creative Enterprises Forsyth whose death was possibly caused by a family caregiver.

Even though such homicides are rare, Creative Enterprises staff point to these deaths as the worst possible outcome of a system that’s overstrained and underresourced. In particular, they question whether providing occasional 24-hour care for people with disabilities could have prevented the tragedies.

While Creative Enterprises offers day services to people with disabilities, there are few places in Forsyth County that have around-the-clock care. An overnight stay can provide a welcome relief for families who are struggling to care for an adult son or daughter.

Lisa Bennett, manager of Creative Enterprises Forsyth and Dawson, knew both the women who died. She says she’s now living in constant fear that another person with a disability she knows will die.

“I have two clients here who I’m extremely worried about. I’ll leave it at that,” she said.

It’s still not clear exactly what happened in either death, and in Frix’s case, the investigation is still ongoing. The earlier case, in 2019, resulted in a caregiver being convicted for the murder of a woman with Down syndrome.

Sen. Sally Harrell, who oversaw legislative hearings into the problems plaguing the disability community, spoke aboutFrix’s death on the Senate floor Jan. 13, one week after the murder-suicide took place. Police believe that Jerry Frix, 58, killed his autistic daughter and then himself at his home in Cumming, she said. Harrell said Frix’s wife had died a few years ago and he had quit his job to help care for Megan.

Although the Frix family received services at home to help care for Megan, Harrell believes the support was simply not enough.

“Extreme situations can cause people to do things they would not typically do, and as a state, we bear the responsibility for failing this family,” she told her fellow lawmakers.

Continued

Charlene Jones grew up visiting her aunt and, about 20 years ago, moved to Belleville to be closer to her. For over a decade, as she became her aunt’s guardian, Jones said she visited her aunt at the Hoeft Home as often as she could.

Jones would sit in the home’s community room, placing her hands in the palms of her aunt’s, letting her feel the skin on her fingers. Sometimes, Aunt Bertha would push her niece’s hands away, which Charlene Jones took to mean that she did not want to be bothered. Other times, she would keep gripping them, rocking back and forth in her recliner chair.

“She was a sweetheart,” Jones said. “That was my aunt.”

Around February, Jones said, she began seeing changes.

During visits, her aunt didn’t hold her hands much anymore, she said. Her cheeks were hollowing out, she added, and her frame seemed to be getting smaller every time Jones saw her.

Something is wrong, Jones recalled thinking.

But when she asked staff about the differences she had noticed, “They kept saying, ‘Oh, I don’t know, nothing’s wrong,’” Jones said.

At the time, according to the lawsuit, staff members had guidelines to feed Bertha Jones at least three pureed meals a day. She weighed 126 pounds in February, according to the lawsuit.

By late March, she weighed 103, it states. And on April 14, when she was taken to the hospital after being found unresponsive early in the morning, she weighed 72 pounds, according to the lawsuit.

After nine days at the hospital, Bertha Jones was moved to another facility for end-of-life care.

Continued

New Medicaid Waiver Rules Take Effect

By Michelle Diament, Disability Scoop, March 16, 2023

After nine years and multiple delays, a new Medicaid rule establishing standards for what counts as home and community-based services for people with disabilities will take effect this week, but many states remain ill-prepared.

The deadline for states to come into compliance with the so-called “settings rule” is Friday.

The 2014 regulation from the Centers for Medicare & Medicaid Services requires that programs meet certain criteria in order to qualify as community based and be eligible for funding provided by Medicaid home and community-based services waivers.

Under the rule, home and community-based settings are defined as places individuals choose to live that are integrated in and provide full access to the community. Such settings must offer privacy, dignity and respect and allow people with disabilities the ability to make independent choices about their daily activities, physical environment and who they are in contact with.

Continued

Study Finds Psychiatry Training On Developmental Disabilities ‘Insufficient’

By Michelle Diament, Disability Scoop, March 13, 2023

Psychiatrists are often some of the main providers of care for people with autism and intellectual disability, but new research finds that many of these specialists have little training to meet the needs of this population.

The directors of psychiatry residency programs across the country report that their trainees receive relatively few hours per year of training in autism and intellectual disability and are exposed to a limited number of patients with these conditions.

The findings published recently in the journal Autism come from a study based on surveys of 78 leaders at 83 accredited psychiatry training programs in 2019. They included 46 programs focused on child and adolescent psychiatry, 33 for general psychiatry residents and two pediatric programs.

Nearly half of child and adolescent psychiatry programs reported that trainees received four to six lecture hours per year on autism. About a third said residents saw 11 to 20 outpatients on the spectrum per year and a similar number of inpatients with the conditions, while trainees in most remaining programs saw fewer.

Residents in general psychiatry programs had even less exposure to training on autism or patients with such diagnoses, the study found.

Continued

[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.

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.

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

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