October 21, 2022

**  VOR's Fall Membership Campaign  **

Give Two Gift Memberships for the Price of One!

From now until Thanksgiving, 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!

This offer applies only to individual gift memberships. You must be a current member to take advantage of this offer, and your gift recipients must either be new members or people whose membership have lapsed for more than one year (before October 15, 2021)

What should you do if you see one of these blue buckets? Nothing drastic, but for sure be considerate. Many of these children are non-verbal, and may not respond if you ask them any questions. They also might not be as engaged with you as other children.

The best thing you can do is acknowledge them like you would any other child, but don't pressure them for any kind of response, and be patient. Also, if you happen to be wearing a particularly scary costume, it might be a good idea to make yourself look a little less threatening if possible.

The bottom line, though, is these children are just that - children. They want to laugh, play, and participate like the rest of the kids. They just might require a little extra consideration.

Read the full article here

Disability Service Provider Crisis Worsening, Survey Finds

ByMichelle Diament, Disability Scoop, October 21, 2022

Disability service providers across the nation are overwhelmingly turning away new referrals, shutting down programs and services and struggling to maintain standards and there’s no relief in sight.

Findings released this month from a survey of 718 organizations serving people with intellectual and developmental disabilities nationally show that providers are continuing to shrink more than two years after the onset of the COVID-19 pandemic set the beleaguered sector into a tailspin.

Of the providers surveyed, 83% said they are turning away new referrals, 63% indicated that they have discontinued programs and services and more than half said they’re considering further closures. Nearly all respondents said they’ve had trouble achieving quality standards.

This is the third year that the American Network of Community Options and Resources, or ANCOR — which represents disability service providers across the nation — has fielded the survey. The latest one was conducted during a four-week period beginning in August.

Since the start of the pandemic, ANCOR has found that the number of organizations closing programs and services has grown by 85% and the share of providers denying new referrals has increased by a quarter.

Staffing troubles are largely to blame for the difficulties facing providers, ANCOR said, with many people shunning low wage, challenging direct support professional positions in favor of higher pay at fast food restaurants, retail establishments and elsewhere.

And the problems are only expected to get worse. The survey found that 66% of providers anticipate more vacancies and higher turnover when COVID-19 relief funding runs out and other regulatory flexibilities associated with the public health emergency end.

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Key findings from ANCOR’s 2022 State of America’s Direct Support Workforce Crisis survey include that:

• 83% of providers are turning away new referrals, a 25.8% increase since the beginning of the pandemic.

• 63% of providers are discontinuing programs and services, a staggering 85.3% increase since the beginning of the pandemic.

• 92% of providers are struggling to achieve quality standards, a 33.3% increase since the beginning of the pandemic and a 13.6% increase in the last year alone.

• 71% of case managers are struggling to find available providers, citing difficulty to connect families to long-term services and supports due to lack of available providers.

Download the report from ANCOR here

“All of our savings is gone,” said Rachel, who spoke on condition of anonymity to protect her son’s privacy. She and her husband have taken out a second mortgage and borrowed against their retirement accounts.

“How are we going to send our kids to school?” she said. “How are we going to recover from this? I don’t know.” Just surviving the string of crises is all-consuming. “Those thoughts in your mind — there’s no space for that when you are just trying to keep your child alive.”

Untold numbers of families like Rachel’s are dealing with myriad challenges finding and paying for mental health care, and then ending up in debt. There are too few therapists and psychologists in the U.S. — and fewer still who accept insurance. That compounds the financial toll on families.

Some desperate families go to even more extreme lengths to get mental health care covered by Medicaid. Some leave their children at hospitals, relinquishing custody, so they become wards of the state. Others simply forgo care altogether.

So, how much is this costing families across America? And how many are forgoing care? It’s hard to know.

Read the full article here

An Autistic Teen Needed Mental Health Help. He Spent Weeks in an ER Instead.

By William Wan, The Washington Post, October 20, 2022

By his fourth week waiting for help in the emergency room, Zachary Chafos’s skin had turned pale white from lack of sun.

His mother, Cheryl Chafos, bathed her autistic teenage son daily in the ER’s shower, trying to scrub the sickly pallor off him. His father, Tim Chafos, held the 18-year-old’s hand, trying to soothe his son’s pain and confusion over what was happening.

They’d brought Zach to Howard County General Hospital on Nov. 12, 2020, amid a severe mental crisis. All his life, he’d been the joyful center of their family. But after months of pandemic isolation, Zach had become uncontrollably angry and begun physically assaulting his parents and his younger brothers.

Now he and his parents found themselves in medical purgatory, waiting for psychiatric treatment that never seemed to arrive. Every day, Zach’s case manager in the ER would call to see if a psychiatric bed had opened up. Every day, the answer was no.

In the state of Maryland, there are roughly 1,040 licensed psychiatric beds for adults in general and private hospitals and another 240 for children and teens. The majority are almost always full.

As a result, patients rushed to the emergency room often spend days or even weeks waiting for beds to open up in psychiatric hospitals and wards. The younger the patients are, and the more severe their cases, the fewer beds there are, and the longer they often wait.

The problem is a national one, with kids and teens from California to Maine languishing in ERs. Many are deeply depressed or suicidal — mental health issues that were already on the rise before the pandemic but have since reached unprecedented levels.

A children’s hospital in Colorado became so overloaded last year with psychiatric patients that it declared a state of emergency. A group representing more than 200 other children’s hospitals warned that the number of kids showing up in mental crisis has far outstripped resources.

But the situation is especially acute in Maryland, whose emergency rooms suffer from some of the country’s longest average wait times for those in need of psychiatric treatment.

For Zach, everything about the ER made things worse. His autism meant he had little understanding of his surroundings, and his speech was mostly limited to one- or two-word sentences. The only place the hospital could house him during lengthy stays in 2020 and again in 2021 was a sunless room in the middle of an ER filled with the overwhelming sound of other patients in pain. Later, his parents would look back on those weeks, especially the final ones, with deep regret and guilt.

Amid the pandemic, his parents were allowed to visit Zach just once a day. He’d struggled with debilitating epileptic seizures since age 14, prompting his parents to measure his medication down to the milligram. In the ER, doctors changed his doses, Zach’s medical records show, and he had two massive seizures within his first several days there.

It took 28 days for the ER nurses to find a psychiatric bed for Zach.

Among patients who wait the longest, Zach was in the worst possible category: a teenager with mental health problems as well as neurological developmental delays.

Only one Maryland hospital — Sheppard Pratt, a renowned private facility in Towson — treats such patients in its neuropsychiatric unit. The unit is expensive to run, Sheppard officials said, requiring four times the number of staff as a standard psychiatric ward. There are eight beds for children and five for adults. They are in constant demand.

After being diagnosed and treated, the longest any patient should stay in the ER is four hours, according to a recommendation by the Joint Commission, a nonprofit organization in charge of hospital accreditation.

No one knows exactly how many mentally ill children and teens in America are left to linger in the ER. A recently published national sample of 88 pediatric hospitals found all but one regularly keeping some children overnight because they’re unable to transfer them to a psychiatric unit — a practice known as psychiatric boarding.

Read the full article here

voluntarily or removed from their homes due to accusations of abuse, neglect, or abandonment. Child welfare advocates say being shuttled between temporary placements adds trauma.

Kids end up in hotels and offices for many reasons, including a shortage of foster parents with the training and support to take high-needs children and a lack of community-based support services for families.

Long-term solutions have been hard to find. States such as Washington, West Virginia, Texas, Oregon, and Georgia have resorted to placing foster children in less-than-ideal temporary living situations for years.

There’s no nationwide count of how many foster kids might be sleeping in a hotel or office. But state-level reports indicate that the disruptions of the covid-19 pandemic have made the matter worse. Child welfare agencies faced the same staffing shortages that hit health care facilities. Foster families hesitated to take in children because of heightened concerns about disease transmission. States diverted dollars and personnel to fight the public health emergency.

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Office of the Inspector General recommends Increased Focus on Medicaid Managed Care 

From HME News, October 17, 2022

The U.S. Office of Inspector General recommends that CMS implement a plan to increase Medicaid program integrity activities by the UPICs (Unified Program Integrity Contractors).

The OIG found that UPICs conducted substantially more program integrity work for Medicare FFS than Medicaid in 2019. It also found they conducted only minimal activities related to Medicaid managed care, even though most Medicaid enrollees receive services through managed care. Additionally, the OIG found that UPICs reported no data analysis projects related to Medicaid managed care and they reported only one fraud referral for Medicaid managed care.

“Overall, UPICs conducted disproportionately fewer Medicaid activities compared to the levels of funding they received from CMS for Medicaid program integrity activities,” the OIG stated.

The OIG recommends CMS make improvements to the [case management] system, implement a plan to help ensure the success of MCC for Medicaid referrals and identify the reasons for the unexplained variation in program integrity activities across UPICs. CMS concurred with all recommendations.  

Read the full article here

Download the Inspector General's report here

Pennsylvania - Polk Center Residents Relocated Amid Fizzling Legislation to Save the Facility 

By Gavin Fish, Explore Clarion County, October 17, 2022

Residents of Polk State Center continue to be transferred to other state-operated facilities according to a statement from the Pennsylvania Department of Human Services. The Derrick reported that as of Friday, the center was down to 112 residents under their care.

Efforts by legislators to prevent or delay the closure of Polk Center since its announcement in 2019 have been unsuccessful. Senate Bill 924, sponsored by eight Republicans led by State Senator Michele Brooks, passed out of the upper chamber and was delivered to the state House of Representatives last December. So far, the full House hasn’t taken up the legislation. The bill, if passed, would institute a moratorium on the scheduled closing of Polk and White Haven State Centers by amending sections of the Mental Health and Intellectual Disability Act of 1966, according the Senate’s website.

House Republicans pushed the bill through committee, passing along party lines. The legislation has been “laid on the table” since June 28th, meaning it’s on House Majority Leader Kerry Benninghoff’s desk. It’s unclear why the bill hasn’t been brought to the floor for a vote.

DHS Secretary Teresa Miller announced the closure of Polk and White Haven State Centers in a media release in August of 2019. According to the release, the closures reflected the Wolf Administration’s priority on reducing reliance on institutional care and to improve access to home and community-based services. The closures were expected to take three years. The announcement was not welcome news for many in the community.

“This is the wrong decision, on the wrong day, for the wrong reasons,” said Irene McCabe, whose sister resided at the Polk State Center at the time. “There is nothing about this decision that is right. It’s insulting, rude, and ignorant. These people (who made the decision) are supposed to be skilled at relationships and communication and foreseeing what the problem is and have a channel for a solution. They put the announcement out too soon. I don’t know why they felt they had to do it that quick. They weren’t ready. Everybody knows it doesn’t make sense.”

At a September 2019 rally, Venango County Commissioner Albert “Chip” Abramovic said in support of keeping Polk Center open, “Today we stand united. Today we stand as one. Today we stand unified. We stand unified for those families and those loved ones who are at Polk Center, those individuals who don’t have a voice, those individuals who you care for, those individuals that are part of our community.

“No one else can speak for them, but we can. We can be that one voice together, that one voice to lead a charge to save their home. That one voice, unified together, to make an impact for those individuals that can’t be heard and aren’t listened to.”

Continued

Iowa - State Has Learned from Previous Medicaid Transition Missteps, Agency Director Says     

By Erin Murphy, Ottumwa Courier, October 17, 2022

Kelly Garcia said the state has learned from missteps made during the transition to private management of the state’s $7 billion Medicaid program and pledged that those hard lessons are being applied as the state once again brings on a new private partner.

“Obviously, through some of the pain points experienced with the managed care rollout and onboarding MCOs (managed care organizations) in the state, we have a number of lessons learned that we have taken,” Garcia said Thursday during The Gazette’s Iowa Ideas conference.

“We built it into the (request for proposals), and we built into our timeline to ensure that claims processing was ready to go. … A lot of lessons learned to not have repeat failures. ... We have a really deep plan. It is very intense.”

The state recently contracted with California-based Molina Healthcare to become the third managed care organization for the state’s roughly 800,000 Medicaid recipients.

In previous transitions between Medicaid managed care organizations, some Iowans complained of confusion and frustration.

During a one-hour session for the virtual conference, Garcia also discussed the combining of multiple state agencies into the new Iowa Department of Health and Human Services, and the closure of the state-operated facility for Iowans with intellectual and developmental disabilities in Glenwood.

Garcia said Gov. Kim Reynolds asked her to evaluate whether the state should merge the former public health and human services departments, but that it was ultimately her recommendation.

“She gave me the space to give her that independent analysis,” Garcia said. “And, ultimately, it was my very strong recommendation to her that we do.”

Garcia said one consideration was the myriad agencies’ involvement in services in mental health care, substance abuse, maternal health care and Medicaid.

The former Department of Human Services, which includes Iowa’s Medicaid program, had a nearly $10 billion budget and employed 4,233 in the most recent state budget year, according to state records.

The former Department of Public Health budget was nearly $800 million with 525 people.

Garcia said throughout the transition she has been in contact with staff, boards under the former structure and stakeholders.

“That’s what success looks like for me — is really engaging, bringing the people who do the work and who we partner with to do the work to the table to help craft an organizational structure that allows us to drive home on really solving these big subject matter areas, while really getting down to the kind of brass tacks of improvement. And you have to do both.”

Glenwood

Garcia said her staff is working closely with the families of residents of the Glenwood Resource Center as plans are made for when the facility closes in 2024. She said the decision to close the facility, which faced scrutiny from federal regulators, was not reached lightly.

“That announcement did not come easily at all,” she said. “We did our absolute best effort to reshape what we’re doing at Glenwood.”

“Most states have closed their state-run facilities or reshaped them tremendously. And we’re one of the last states to do that really intensive work. So I already had plans underway to kind of reshape it,” Garcia said. “But, ultimately, we really are struggling with providing the level of medical care out at that facility that we need to, and so I couldn’t in good faith look at the guardians or the clients or my own team members in the eye and say, ‘We can do this.’ We just can’t. And so we are on a path.”

Garcia said nearly 30 community-based providers have talked to the state about housing Glenwood residents.

Read the full article here

Jacobs was afraid Burch, a clinical assistant professor at Texas A&M College of Dentistry, would tell her the same thing as every dentist before him: that he couldn’t treat her youngest daughter, Jaramella Allen. And she was angry that her daughter might have to keep living in constant pain from untreated dental problems.

Allen, 33, was born with microcephaly, or an unexpectedly small head, and a host of other medical problems. She regularly has seizures, can’t speak and relies on her mother and sister for round-the-clock care.

She’s also the size of a child, leaving her in a dental limbo. Pediatric dentists say Allen’s too old to be their patient, while adult dentists say they’re not qualified to treat her. In the eight years since she moved to Wichita Falls, Ella has called dozens of dentists and oral surgeons in North Texas trying to find someone, anyone, who would see her daughter.

Allen lost 17 teeth during that time.

Few dentists are trained in treating adults with intellectual and developmental disabilities, especially when those disabilities require a patient to be sedated for dental exams and cleanings. There are only five dental offices in North Texas that work with this population.

It’s a reality that inspired Burch to start the Compromised Care and Hospital Dentistry Fellowship at Texas A&M College of Dentistry, one of the first fellowship programs in the state designed to serve special-needs patients across their lifetimes.

Continued

Calfornia - Easterseals Accepts $1M in State Funding to Help Expand Services for Severest Autism Cases 

By Sara Cardine, The Daily Pilot, October 15, 2022

Children and young adults with developmental disabilities that present severe behaviors — such as sudden episodes of impulse or aggression, angry verbal outbursts or violence — often have few places to turn to for help, hope and treatment.

Families may be frustrated or feel they’ve reached the end of their rope in finding services for loved ones, as few facilities and programs exist and those that do are often at capacity. Enter Easterseals of Southern California.

The nonprofit serves more than 15,000 people with disabilities, primarily autism spectrum disorders, which affect one in 26 children in California, according to the CDC. In 2020, when Easterseals acquired the Irvine-based Center for Behavioral Sciences, it was able to launch an outpatient Severe Behavior Services Program, the only one of its kind on the West Coast.

Today, a team of Applied Behavior Analysis therapists, speech pathologists and other professionals work intensely with 18 patients throughout the year in Irvine and a smaller facility in Northridge.

Staff provide intensive, short-term treatment that allows participants to remain at home or transition safely back into a school or work environment, says Paula Pompa-Craven, chief clinical officer.

“We’re talking about people who may be a danger to themselves or others, or who have severely injurious or aggressive behavior,” Pompa-Craven said Thursday. “A lot of times, these individuals fall through the cracks, because there aren’t services that support them.”

Patients as young as 10 years old come from Orange and Los Angeles counties, and from as far as Kern and San Diego counties, to receive functional assessment, analysis and consultation along with occupational and physical therapy and help with social skills.

And now, the program is looking to expand.

Easterseals officials have announced a fundraising campaign that aims to raise $6 million to $7 million for the expansion of the Severe Behavior Services program that would allow it to serve up to 100 participants from throughout Orange County and beyond at its Irvine facility.

Continued

October is National Disability Employment Awareness Month

“A job is about a lot more than a paycheck. It’s about your dignity. It’s about respect. It’s about your place in your community.”

 - Joe Biden, August 20, 2020

VOR supports all opportunities for employment for individuals with intellectual and developmental disabilities. We advocate for programs that increase competitive integrated employment with the understanding that there is a need to preserve employment opportunities for those who are unlikely to be accommodated by most companies that do try to provide jobs to those with I/DD and autism. 

Vocational centers and 14(c) Certificates are unique employment opportunities tailored to meet the needs of individuals with I/DD and autism. In these facilities, job coaches are equipped to help our loved ones develop skills and productivity, while having the DSP training to address the physical, behavioral, and hygienic challenges that arise during the course of a day.

October is the month celebrate Employment Awareness for people with I/DD and autism. Let us increase all employment opportunities, as part of true person-centered planning for all of our loved ones, not just those who are readily accommodated into competitive integrated employment programs. 

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 join.

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

info@vor.net

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

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

VOR SUPPORTS:

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. 1544- Accelerating 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.



VOR OPPOSES:

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.

Families of Individuals with

Severe/Profound I/DD and Autism

Need a Voice in Washington, D.C.

For Forty Years, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over ninety meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

Please click here to join, renew your membership, or contribute to VOR