December 23, 2022

VOR's Weekly News Update

VOR is a national non-profit organization that advocates for

high quality care and human rights for all people with

intellectual and developmental disabilities.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


Breaking News:

House Approves FY 2023 Omnibus Appropriations Bill

The House has given final passage to the FY2023 omnibus appropriations bill, sending it to President Biden. The vote was 225-201 with one member voting present. The Senate passed the legislation yesterday on a vote of 68-29.

The $1.7 trillion measure funds the government through September 30th 2023 and contains a list of Medicare and Medicaid extenders, as well as an extension of the CHIP program, special hospital programs and telehealth flexibilities, a partial restoration of a cut in physician payments, an accelerated start date for Medicaid eligibility redeterminations by state programs and funding boosts for the NIH and CDC.

The bill also includes a $450 million per year allocation to Money Follows the Person through 2027 and provides $410 million in grants to states to support wages and training for some direct support professionals.

Download the full bill here

Save the date:

VOR's January Networking Meeting

Tuesday, January 24

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

We invite you to join us on Zoom to meet with like-minded advocates and families of individuals with I/DD and autism.

Our topic this month will be a look at the

118th Congress

and the issues that we may be bringing to their attention in coming session.

The forum will be moderated by Roslyn Leehey. and feature a presentation from Gayle Gerdes of Health Policy Solutions and

VOR's President Joanne St. Amand & Executive Director Hugo Dwyer

Registration will be free.

Stay tuned for more details.

One Week Left to Contribute to

VOR's 2022 Year-End Fundraising Campaign

This year we have set a pretty high goal for our fundraising.

We are aiming at raising


We would like to increase our membership by adding 100 new families.

We have a long way to go.

VOR has always relied on our families and family associations to fund our operations. We take no money from outside interests. We advocate for choice, for your choice,

to determine what is best for your family members with I/DD and autism.

This holiday, please give generously.



    Click Here to Give Two VOR Gift Memberships     For the Price of One!

The Perfect Holiday Gift!

Give Two VOR Gift Memberships for the Price of One!

From now until December 31st, when you give a friend or family member the gift of a one-year membership in VOR,

you may give another gift membership for free!

Special Offer!

For the months of November and December,

anyone donating $250 or more to VOR

will receive a first-edition copy of


new book


Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her 50 years of advocacy and philanthropy, starting with the birth of her son Robert, through her building of 25 homes for people with intellectual disabilities, and sharing her experiences, hopes, and fears as she navigated the political and financial landscape that defines the I/DD system today.

Please click here to Donate

National News:

The following is a fairly lengthy article that has been edited to highlight some of the issues most interesting to VOR members. We encourage you all to read it in full.

Million-Dollar Question:

How to find Safe Homes for those with Complex Needs

Despite strides in community-based services for people with disabilities, staff shortages and lack of training mean that individuals aren’t getting the services they need.

By Amy Silverman, The Center for Public Integrity, December 19, 2022

Zainab Edwards has had challenges her entire life. She was born profoundly deaf. Digestive issues led to the removal of her colon; she has an ileostomy bag for life. 

For many years, American Sign Language and, later, cochlear implants, allowed her to engage with the world. She flourished – visiting Disneyland with her family, making friends at school and participating in Special Olympics. 

In 2014, everything changed. Edwards began to have difficulty walking and picking up objects. She could no longer tolerate her cochlear implants. She began to have hundreds of uncontrollable seizures each day. She became combative, lashing out physically at caregivers and her mother. At one point, her condition was so bad she couldn’t feed herself.

It took years to figure out what was going on and by then, it was too late for a full recovery.

In 2017, Edwards was diagnosed with autoimmune encephalitis, a rare, hard-to-detect condition sometimes called “brain on fire.” Caught early, the effects can be reversed. For Edwards, it was largely too late.

Physical therapy allowed Edwards to ice skate again, and ride her bike. 

“She still can’t write her name,” [Edwards' mother, Cynthia] Elliott said. “She’s lost all those cognitive skills. Those have never come back.”

Unable to keep her daughter safe at home and concerned about what will happen when she and her husband are no longer around to care for her, Elliott, now 71, began to look for a permanent living situation. After a lot of research, she and her husband purchased a townhouse – close to their home, walking distance to a park. The plan was to have the young woman live with a roommate – both for company and to offset costs – with caregivers and other services provided by the state of Arizona. 

That never happened, dashed by Edwards’ aggressive behavior.

Depending on an individual’s needs, some families are able to pay out of pocket for services. But in many circumstances, that’s impossible – leaving family members to care for a loved one round the clock.

About 7.4 million people with intellectual and developmental disabilities live in the U.S. Of those, only about 1 in 5 receives paid supports from a state agency, according to a 2017 U.S. Department of Health and Human Services report.

Most Americans with intellectual and developmental disabilities get nothing at all. Others languish for years on waiting lists. 

But Arizona’s unique structure of services means that the state pays more than a million dollars a year for Edwards’ care. 

And yet Edwards’ family says her quality of life is dismal. Even when funding is available, there are vast disagreements in the disability community about what constitutes an appropriate living setting, let alone specifics regarding care. 

How to create a healthy, happy community setting for an individual with complex behavioral and medical needs is a political, philosophical and economic conversation that often goes unheard.

As of September, Edwards had two round-the-clock caregivers and a third during the day, all three fluent in ASL. She also had a nurse and sign language interpreter for the nurse, both 24/7. A behavior coach was with her 40 hours a week, along with another translator. This – along with medical costs and transportation — is almost all paid for by the government. 

When spending that amount of money on services for one individual still can’t provide a safe, happy and productive life, it calls into question how the money is being spent and the assumptions underlying state policies on care.

Because of high staff turnover and insufficient training, Elliott said, she still provides almost constant care for Edwards — administering medication, grocery shopping, planning outings, making doctor appointments and dealing with trips to the emergency room when Edwards’ behavior spins out of control. 

At least 60 different staff people have been in and out of Edwards’ home in the last couple of years, Elliott said. 

Between January 2018 and January 2022, the police were called to Edwards’ house more than 100 times.

Even when there’s no health crisis, Edwards’ quality of life isn’t great, her mother said. The young woman is surrounded by caregivers, but according to Elliott, it’s rare that anyone attempts to engage with her daughter. Elliott says she has to push staff to have Edwards help with household tasks like emptying the dishwasher or folding clothes. 

After Edwards got second degree burns on her hands and her mother was unable to determine what happened, Elliott installed five cameras in Edwards’ home. She said there hasn’t been a similar episode since – but the cameras show how isolated her daughter is.

It’s not just about pay increases and better oversight. There is a fundamental disagreement within the disability community over how best to provide services to people with the most complex needs.

The federal government has changed guidelines on home- and community-based services to broaden the definition of acceptable housing to include some larger facilities as well as remote settings such as farms, but there is a heated debate in the disability community about how best to serve people with the most complex needs, many of whom have autism.

Jill Escher lives in northern California and heads the National Council on Severe Autism, an organization that is controversial for many reasons – including its name. Her son, now in his 20s, is autistic and lives in a house with support staff in the community close to his parents, who see him daily. The home has locks on the doors that can be used to prevent him from wandering. Many advocates in the disability community are opposed to any kind of locked living environment. Escher said it’s required for safety. 

“Society basically wants nothing to do with my son,” she said. “It’s very easy for people in the disability rights community to talk about inclusion. For other people, having specialized supports is absolutely the paramount goal.” 

Julia Bascom, executive director of the Autistic Self Advocacy Network in Washington, D.C., understands that the needs of people on the autism spectrum can vary dramatically. But she believes that just about everyone can live in the community. She said she’s seen it, but admits it’s somewhat rare. 

“I haven’t seen it scale effectively to a state or a series of states,” she said. 

“It’s not just putting a group home in a neighborhood, but actually supporting that person to have relationships,” she said. “Even when we’re spending a million dollars, we’re not necessarily spending it on things that work.”

Instead of the term “severe autism,” Bascom and others in her circle prefer that the individual be described with specifics – for example, as having “complex behavioral needs.” 

The conversation gets tricky, fast. 

Last year, David Axelrod, who served as a senior advisor to former President Barack Obama, wrote an op-ed for the New York Times about his daughter, who has complex needs and lives in an institution-like setting in Chicago. He was vilified by the disability community because he was seen to be supporting institutionalization. But even settings like the one Axelrod’s daughter is in sometimes won’t accept a person with aggressive behavior.

“Someone called it the Grand Canyon of service gaps,” Escher said. “That’s right. That’s exactly what it is.” 


On a pretty winter day in Mesa, Arizona, Zainab Edwards made a brief appearance at the park near her house. She wore a harness designed to keep her safe when riding in the minivan necessary to transport her entourage, who trail behind. After a few minutes, Edwards was ready to go home. The van pulled away and Cynthia Elliott – who drove separately – found a shady spot at a picnic table. She spoke about what Zainab’s life was like before the autoimmune encephalitis. 

Since she got sick, every single thing seems to be a struggle. Recently, Elliott said, “I was changing her ostomy bag. And they [the staff] had let it leak all night so her skin was really raw and so it hurts.” 

After that, Elliott demanded 24/7 nursing care for Edwards. The state agreed. Elliott credited the behavioral coach, nursing care and the cameras – which she monitors constantly on her phone – with keeping Zainab safe. But the trips to the ER continue. Elliott was not sure how long this can go on and lately, she said, she’d started to wonder if an institution wouldn’t be a better option for her daughter. 

“Some facility that could safely provide for all of her needs,” Elliott said.

Shortly before the pandemic, Elliott and several other local advocates drove to the tiny town of Coolidge, to tour the Arizona Training Program. They wanted to see what an institutional setting looks like. The expansive grounds once housed more than a thousand people, but today only a few dozen remain. When the last person dies, it will close. 

Elliott recalled that the other advocates — most of whom have family with intellectual or developmental disabilities – were shocked at the setting. She was not. 

“I have some comparison and I thought it looked pretty good,” Elliott said. 

If the institution was still accepting new people, Elliott would probably send her daughter there, she said, looking wistful. She’s not sure Edwards will be safe anywhere in the community.

“I get that Zainab is difficult and she doesn’t fit anywhere.” 

 Read the full article here

Opinion: Why are Schools Submitting Kids to this Barbaric Treatment?

By Brian Calley. The Washington Post, December 22, 2022 

Brian Calley, a former lieutenant governor of Michigan, is chief executive of the Small Business Association of Michigan and vice chair of the Autism Alliance of Michigan board of directors.

Imagine a child with a disability, unable to communicate needs, wants or fears. In frustration or fright, that child might overturn a desk or throw a book. Now, imagine a teacher secluding that child in a dark closet or pinning that child to the floor.

This year, thousands of U.S. schools are using these barbaric “restraint and seclusion” practices as go-to strategies to punish or segregate students with disabilities. Yet these techniques don’t resolve problematic or dangerous behaviors — they make things worse, escalating behaviors and potentially causing physical harm to children, emotional damage or even death.

“Restraint” refers to physical force or the use of a device such as ties or straps to hold a child down. “Seclusion” involves forced isolation — solitary confinement in a closed spaced such as a soundproof, padded room or a closet where an unsupervised child having a meltdown could be seriously injured.

I have a daughter with autism. When I first heard about this practice, I thought it must be rare. But it is shockingly common, having been used against tens of thousands of U.S. students in recent years.

In Michigan alone, where my family resides, restraint and seclusion was used in schools more than 94,000 times from 2017 to 2022. Because there are no penalties issued to schools for failing to report, this number is undoubtedly an undercount. An Education Department analysis covering the 2017-2018 school year (based on self-reporting) showed that more than 100,000 children across the United States had been subjected to these inhumane practices.

Each use of restraint and seclusion diminishes the future of any child subjected to it. Put yourself in the child’s shoes: What if you went five days a week to a school that regularly locked you up or physically held you down? Most of us would walk in ready for a fight, not to learn.

In 2015, as Michigan’s lieutenant governor, I went on a statewide special-education listening tour, speaking with educators, administrators, parents and students. I heard over and over from parents about the trauma their children faced with the regular use of restraint and seclusion, even as school administrators assured me that such tactics were used only in emergencies and, even then, rarely.

It was clear this was a major problem. So, my office developed a proposal to ban restraint and seclusion in non-emergency situations. In 2016, I signed legislation that did just that, and that required schools to report to parents and the Michigan Department of Education when the practice was used, so we could track its prevalence. The resulting data revealed a situation that was even worse than I feared.

Those who insist on using restraint and seclusion generally cite problematic or explosive behaviors as justification. Sometimes, in emergencies that present immediate danger to the student or others — a child running out into a roadway, or trying to physically harm another student — temporary physical restraint might be necessary as a last resort. But it should be limited to situations of imminent physical injury, never restrict a child’s breathing, and never persist longer than necessary to prevent harm.

There is another way. It starts with understanding that all behavior has a purpose; knowing the motivation behind a behavior is critical to building an effective plan to head it off. For example, if the problem behavior is attention-seeking, scolding or sending a student to the principal’s office might unintentionally reinforce and escalate the problem — because punishment is attention. In this case, a plan might call for the teacher to ignore certain behaviors, what is known in the behavioral-sciences world as “putting the behavior on extinction.”

Another approach says it’s not enough to simply prevent problem behaviors; we need to teach and reinforce favorable ones. In the above example, the plan wouldn’t only say to ignore, but also to heap positive attention on a child who exhibits desired behaviors.

A comprehensive plan might also call for frequent breaks. It might say, don’t discourage self-regulating behaviors such as hand flapping or spinning; do control for noise levels and lighting. Truly understanding the needs, desires and triggers of each child helps prevent and de-escalate the behaviors that can lead to restraint and seclusion.

This all necessitates significant training and specialized personnel. Ideally, every school would have a board-certified behavior analyst on-site and a teaching staff dedicated to learning and sticking to evidence-based plans — which costs money. But it also demands a strong will to change.


State News:

Opinion: Pennsylvania Adults with Autism Deserve More

By Amy Lutz, The Philadelphia Citizen, December 21, 2022

ith the gubernatorial election finished and the transition under way, Jody Weaver’s attention is anxiously fixed on Harrisburg. Next month, she is due to meet with representatives from the Office of Developmental Programs (ODP) to discuss the fate of her severely autistic twins.

Whether or not ODP will force Matt and Dan Guerrisi, 29, from their homes at Woods Services — a 300-acre campus in Bucks County that serves autistic and intellectually and developmentally disabled individuals — largely depends on whether current leadership survives into the next administration.

If nothing changes, it’s unlikely that ODP will change its position: that Matt and Dan need to transition into a group home that the agency considers more integrated into the community than Woods — even though Weaver and her partner, Mike Guerrisi, are fighting this move; the twins’ doctors oppose it; and it will cost taxpayers at least $650,000 more, per year, to support Matt and Dan in an environment that has already failed them multiple times.

When ODP reluctantly supported the twins’ admission to Woods in 2021, it was only because they had nowhere else to go. As students, Matt and Dan had thrived at the Camphill School, a farm-based program in Chester County. But when they graduated, nothing similar was available to them.

From fighting to thriving

Pennsylvania is one of the most restrictive states in the country in terms of the residential options open to intellectually and developmentally disabled adults: no farmsteads, no campuses, no intentional communities of any kind. Inclusion advocates have dismissed these larger settings as isolated and segregated, by definition, and ODP has opted to follow their guidance, crafting much stricter regulations than required by the Centers for Medicare and Medicaid Services (CMS).

Waiver recipients like Matt and Dan can only be supported in small, dispersed settings such as their family home, individual apartments, and group homes — which is where the twins ended up in 2015.

But, as Weaver explains: “They were never more isolated than they were in those group homes.” Stripped from their peers, their meaningful work, and their vibrant community, the twins’ disruptive behavior skyrocketed. They kicked holes in the walls, broke furniture, shredded curtains, carpets and bedding, and shoved so many things down the toilet that they flooded the house.

Even worse was their aggression. Dan required an MRI because he bashed his head so often and with such force doctors feared he had concussed himself. And staff frequently suffered severe injuries, including broken bones, brain damage, and bites that required more than 20 stitches.

By the end of the group home experiment, which saw the twins bounced among three agencies over five years, police and ambulance services were being summoned almost every day, sometimes more than once. Matt or Dan would be locked in a room in the ER and dosed with enough Haldol for them to be returned to the group home – until the day that their service provider refused to let Dan come back from his most recent psychiatric hospitalization.

“I know what will happen if Matt and Dan are moved back into a group home,” she says. “Exactly what happened before. All their progress will evaporate, someone’s going to get really hurt, and they’ll end up in the hospital, back in that locked room.”

Weaver and Guerrisi took their son home, but they knew that wasn’t a long-term solution. “There were days that I had to lock myself in my room,” Weaver says.

The family’s desperate situation, combined with the Commonwealth’s overly restrictive regulations, caught the attention of Together for Choice, a national organization that fights for the rights of the intellectually and developmentally disabled. National Coordinator Ashley Kim Weiss was able to help Weaver negotiate a placement at Woods — even though Pennsylvania residents are not allowed to use their waiver dollars there, resulting in the bizarre case of a Pennsylvania facility forced to largely serve clients from New York and New Jersey.

Now, “Matt and Dan are thriving at Woods,” Weaver says. When they’re not in their vocational program, the twins enjoy shooting baskets, swimming in either the outdoor or indoor pool, walking the nature trail, and going out for ice cream or to play games at Dave and Buster’s.

Most importantly, their violent behavior has dropped dramatically. “There used to be multiple aggressive episodes every day,” Weaver says. “Now, there are one or two mild incidents every few months. Their medication has even been reduced.”

And although her sons’ intellectual disability keeps them from articulating their thoughts about Woods, their feelings are obvious to their parents. “When we used to drop them off at the group home after a weekend home with us, they would hang on us and say, ‘no no no.’ Now, when we drop them off, like after Thanksgiving, they say, ‘Bye Mommy,’ and run off.”

But Weaver and Guerrisi barely had time to enjoy their sons’ transformations before ODP began pressing for their transition back to a group home — based solely on their ideological opposition to larger settings that, importantly, is unsupported by research.

The few studies that have tried to examine the relationship between setting size and various quality of life indicators are so flawed that Dr. David Mandell, Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, summarized, in a 2017 National Autistic Society editorial, “Our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”

And this is why Pennsylvanians should be angered by this story: because we are all paying, literally, for ODP’s values. It costs about $230,000 per year for Woods to provide both residential and vocational services for each twin — which also includes the onsite psychiatric, behavioral, dental, nutritional, and nursing support that a larger setting can provide.

In contrast, the cost to support them in a group home has been as high as $550,000 per year for each twin, not including the tens of thousands of dollars in home repairs required every year for their destructive behaviors. In some cases, the day programming comprised little more than riding in a van to Walmart on those days that the twins’ rages didn’t keep them from leaving the house.

Read the full editorial here

South Carolina Senator Blames Agency Director’s Early Resignation on ‘Problematic’ Commission

By Blair Sabol, WCSC News, December 21, 2022

If it weren’t for the seven-person commission that helps to run the Department of Disabilities and Special Needs, the department would still have a director, one state senator says.

Dr. Michelle Fry resigned from her position after only 14 months on Tuesday.

Fry announced her resignation to staff writing “I have reached the difficult decision to resign as State Director. This is a very difficult decision because I respect, admire, and genuinely enjoy working with each of you and all the great things we have accomplished at DDSN.”

State Senator Katrina Shealy (R-Lexington County), who requested an audit of the department by the legislative audit council, said Fry gave her hope for the future of DDSN. Shealy has met regularly with her during her tenure, and says the commission is to blame for her exit.

“We’re back to the drawing board,” she said. “The commission has just not let her do her job.”

“She’s not been able to make the changes without being so highly scrutinized that it’s just become impossible for her and nobody can work under those circumstances,” Shealy added.

The commission members are appointed by the governor, at the recommendation of the senate.

In February 2021, the commission voted to fire former director Mary Poole alleging that she mishandled an executive sexual harassment issue, but never provided additional details.

An audit is underway, and its findings are expected to be published in early January.

Shealy expects it will include recommendations to re-structure the department, that would follow a cabinet structure rather than a commission.

“It’s kind of like an octopus where you got a head, but all the tentacles are going to different way and eventually it’s just, it pulled the head apart,” Shealy said.

She says there is similar legislation in the works to re-organize the department.

“I hope this is a wake-up call to that commission. We have people that have special needs... and here we’re just playing around with it. This is not a game,” she said.


Minnesota - ‘Not Everyone Can Live Next Door.’ New Hope Defends Decision to Shut Down Group Homes, Displacing People with Disabilities

By Kirsten Swanson, KSTP, December 21, 2022

When police officers arrived at the group home on Wisconsin Avenue in New Hope, paramedics were still trying to revive Jacob Zahradka. Staff at the assisted living facility had called 911 after they found the 37-year-old unconscious and not breathing in his bedroom.

A police report shows officers immediately suspected Zahradka had overdosed after they found a small plastic baggie and a bloody needle near his bed. According to the city, the drug paraphernalia near Jacob’s body was “disorderly behavior.”

The group home, which is licensed by the state to provide services to people with behavioral health issues and substance abuse disorders, was cited for violating the city’s rental licensing code.

New Hope eventually took the rare step of revoking the rental license from the Wisconsin Avenue property and another group home nearby after neighbors and some city leaders publicly questioned whether those facilities should be allowed to operate in their community.

In doing so, the city effectively evicted nearly ten individuals with diagnosed mental health disorders and other disabilities from assisted living facilities that are licensed and regulated by the state.

The acting city manager and police chief defend the decision, saying the city is responsible for the safety of the tenants in the group home and the nearby residents.

But housing experts and disability rights advocates say it’s an alarming tactic that could leave vulnerable adults without services or housing and sets a dangerous precedent.

One expert says the city’s actions may even rise to the level of housing discrimination.

Sheikh Dukuly opened that group home on Wisconsin Avenue in the spring of 2021. He and his brother own and operate more than a dozen care facilities scattered across the West Metro that serve individuals with a variety of special needs.

The group homes are licensed by the state as assisted living facilities. The clients qualify for a waiver that serves people who would normally require the level of care provided in a nursing home.

“We are under tight scrutiny,” Dukuly said. “Not only are (sic) the state monitoring us, there are case managers who are responsible for these residents.”

Some of those residents struggle with severe mental health disorders and substance abuse issues. Others, like Jacob, have suffered from traumatic brain injuries, and are unable to live without support.

With those diagnoses, according to Dukuly, come behavioral issues, including emotional and physical outbursts.

“There’s no guarantee that you’re going to get all residents who are just mellow and don’t have any behavior,” Dukuly said. “That’s not what this program is for.”


Follow-up Story

Minnesota - Lawmakers Worry New Hope’s Decision to Shut Down Group Homes is ‘Slippery Slope’

By Kirsten Swanson, KSTP, December 22, 2022

State lawmakers are concerned that the City of New Hope used a rental ordinance to shut down two state-licensed facilities that cared for people with disabilities. [L]awmakers, including Sen. John Hoffman, DFL-Champlin, described the city’s action as a “loophole” a day after 5 INVESTIGATES reported on the city’s actions.

“You’re uncovering a really scary, slippery slope for all people in Minnesota, people with disabilities,” Hoffman said Thursday. “Where do people that are in these group homes end up going?”

The city’s decision to revoke the rental licenses came after neighbors and some city leaders publicly questioned whether those facilities should be allowed to operate in their community.

“It shocked me to hear that there’s still a prevailing opinion and attitude that ‘those’ people, people with disabilities, don’t belong in our community,” Hoffman said. 

The state senator, who is the incoming chair of the Senate Human Services Committee, said he’s concerned that the city is using this ordinance on two facilities that are licensed and regulated by the state.

“It’s inconsistent,” he said. “I have a contract with the State of Minnesota that says I’m providing services in a facility. And there’s this loophole that says, ‘Well, no, it’s a rental agreement.’ It’s time to close that loophole.

Sen. Jim Abeler agreed. In a statement to 5 INVESTIGATES, Abeler, R-Anoka, said it is “essential” to preserve housing options for people with disabilities. 

“No city should be allowed to deny state licensed services to persons with disabilities and special needs though a loophole,” he wrote.

Both lawmakers worry that other cities could use a similar rental ordinance to shut down unwanted facilities in their own communities, leading to stress on the direct care industry and displacement of some of the state’s most vulnerable individuals.

“Closing down facilities like this is going to increase our homeless population,” Hoffman said. “We will see an increase in more people with disabilities on streets. Period.”

Read the full article here

Oregon - Klamath County Approves Second Developmentally Disabled Resident Abuse Investigator

By Roman Battaglia, Jefferson Public Radio, December 21, 2022

Klamath County commissioners approved the additional protective services investigator position on Tuesday.

The county has seen at least 200 more residents seeking help from the Office of Developmental Disability Services over the last couple of years. The office believes those increases have resulted in more reports of abuse and exploitation.

“That can range across a myriad of situations," said Director Myles Maxey. "That could be they feel like their provider or their family is taking their money, that could be physical abuse, that could be sexual abuse.”

The new investigator will help one other specialist on staff look into around 30 reports per month. At least five of those on average will turn into full-fledged, multi-week investigations, Maxey said. Those incidents range from minor disputes to criminal acts that require police involvement.

Right now, much of the work evaluating reports falls on other staff members who are often busy with their own jobs, Maxey said. Having a second investigator will decrease the need to do that.


Note: Isn't this supposed to be handled by Disability Rights Oregon, the state's Protection and Advocacy agency???

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VOR Bill Watch:

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


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R. 3089 & S. 1544Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

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