April 5, 2019
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

My sister, Cheri, and I attended the VOR Conference for the first time, last year. We had been using the website to help us in our fight to keep our sister in her home (ICF). We felt like we wanted to learn more, to meet the wonderful people who had been so generous with their time and knowledge, not just on the website, but also through many calls and emails to check on us and give us guidance. The VOR Conference was amazing, we were embraced with such sincere warmth and enthusiasm. Everyone was there to not only work on our common goals, but to also be there for each other. 
  -- Karen House, Kentucky
VOR's 2019
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

~ Registration includes a one-year membership in VOR ~

$125 per person if paid by April 30, 2019
$150 per person if paid after May 1, 2019
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C.

Note: Mail in Registration is slow. We recommend registering online.

Additional donations to help defray the event’s costs are always appreciated

Sponsorship Opportunities Are Available!
If you are unable to attend, or if you or your family association would like to support our conference, you can help by becoming a sponsor
Need a roommate for the conference?
Contact us at [email protected] and we will try to help!
Hyatt Regency Capitol Hill      400 New Jersey Ave, NW    Washington, D.C.    20001

We have a bloc of rooms available for conference attendees. The VOR Group rate is $259 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.

To make your reservations online, go to:
If you do not have internet access, c all 1-800-233-1234 and mention “VOR’s Annual Conference” when making your reservation.

National News:
Key Questions About Medicaid Home and Community-Based Services Waiver Waiting Lists
By MaryBeth Musumeci, Priya Chidambaram, and Molly O'Malley Watts, Kaiser Family Foundation, April 4, 2019

This issue brief presents the latest data and answers key questions about HCBS waiver waiting lists from the Kaiser Family Foundation’s 17th annual survey of state Medicaid HCBS programs.
Key findings about Medicaid HCBS waiver waiting lists include:

  • Over 707,000 people are on HCBS waiver waiting lists in 40 states as of 2017, an increase of eight percent over 2016. People with intellectual and developmental disabilities (I/DD) comprise about two-thirds of total waiver waiting list enrollment, while over one-quarter are seniors and adults with physical disabilities.

  • The data do not support the conclusion that there is a relationship between a state’s ACA Medicaid expansion status and changes in its HCBS waiver waiting list. From 2013 to 2017, a higher share of non-expansion states (69%, 13 of 19) had an increase in waiver waiting list enrollment, compared to the share of expansion states (41%, 13 of 32).

  • Waiting list data alone are an incomplete measure of state capacity and demand for HCBS and are not directly comparable across states.

Special Olympics Uproar Draws Attention To Other Disability Program Cuts
By Courtney Perkes, Disability Scoop, April 4, 2019
Recent outcry over a proposal to end federal funding for Special Olympics is helping put the spotlight on other potentially devastating cuts to programs for people with disabilities, advocates say.
Last week, President Donald Trump said he would rescind a $17.6 million cut to Special Olympics from his proposed budget to Congress. But his $4.75 trillion spending plan still calls for cuts to Medicaid and eliminating current funding for autism training and research as well as employment support for people with intellectual and developmental disabilities.

“It’s a threat to people’s health insurance and also the community supports that they depend on,” Julie Ward, deputy executive officer for public policy at The Arc, said of the proposed budget. “It’s alarming for us to see the zeroing out of programs we care about or cuts to programs that are important to the developmental disability community.”

The proposal, which was released last month, calls for large cuts and structural changes to Medicaid. In Trump’s plan, the federal government would provide a fixed amount of money to states each year for Medicaid services rather than send matching grants for states to cover whatever services are needed.

The budget also calls for completely wiping out existing funding of $51 million to the Health
Resources and Services Administration for autism and developmental disorders, which pays for interdisciplinary training of health professionals and research to develop evidence-based services authorized under the Autism CARES Act.

“Before this law existed in 2006, parents were going online and finding crazy ideas for how to treat their own kids, sometimes to their detriment,” said Kim Musheno, vice president of public policy for the Autism Society of America. “This law tried to help resolve it by putting dollars into science-based services and supports. We’re actually finding out what works and disseminating it.”

Advocates are asking stakeholders to discuss the importance of funding programs that are at risk with their lawmakers who have until Oct. 1 to pass spending legislation for the next fiscal year.

“We are happy that Congress is actually in charge of developing the individual appropriation bills and will likely not support these massive cuts to the most vulnerable population in our country. However, it is going to be a difficult budget year again. They’re going to have to make some hard choices.”

US Senate Launches Investigation Of Group Home Provider
By Fedor Zarkhin, The Oregonian via Disability Scoop, April 5, 2019

The U.S. Senate has launched an investigation into a national corporation’s homes for people with disabilities in response to a report about substantiated abuse at one of the company’s facilities.

The Oregonian reported in January that Oregon regulators shuttered a Mentor Network home in Curry County following extensive evidence that a client with a disability had been severely neglected. State regulators found that managers repeatedly ignored caregivers’ concerns about the person’s festering pressure wound, including that it smelled of “rotting flesh.”

“When vulnerable Americans are abused or even killed in the care of a taxpayer-funded care provider, that organization must be held accountable,” Sen. Ron Wyden, D-Ore., said in a statement this week.

The Senate Committee on Finance, chaired by Sen. Chuck Grassley, R-Iowa, sent letters Tuesday to the Oregon and Iowa branches of the The Mentor Network, demanding copies of a raft of compliance records by month’s end. The company operates in 36 states, serving about 13,000 people in group homes and 19,000 in non-residential settings.

Organ Transplant Disability Bias Gets Second Look Under Trump
By Shira Stein, Bloomberg Law, March 29, 2019
  • Head of HHS Office of Civil Rights said stopping discrimination based on disability is priority
  • Organization overseeing organ transplants examining ethics of transplant list criteria

The first time Paul Corby got an organ transplant evaluation, his mother Karen Corby could tell the doctor had already decided not to put him on the donor wait list.

Paul is autistic and carries a Princess Peach doll for comfort, and the doctor asked why he was carrying the doll, she said. When the doctor asked Paul to name the 19 medications he was already taking, he couldn’t.

When Karen asked for a written copy of the doctor’s decision denying Paul a recommendation for a heart transplant, she saw the reason in black ink—it was his autism.

Disability rights activists have been working since the mid-1990s to stop doctors from denying organ transplants to people with intellectual and developmental disabilities. Their efforts could finally be paying off.
The director of the Department of Health and Human Services Office for Civil Rights wants to stop this behavior. He and his staff are discussing a written guidance warning transplant centers that such discrimination is illegal. Separately, the nonprofit organization that facilitates organ transplants, the Organ Procurement and Transplantation Network (OPTN), is looking at the ethical implications of determining organ transplant recipients based on disability.

Both the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 prohibit health-care providers from denying patients access to services and programs based on disability. But neither law explicitly says it’s illegal to refuse to make someone transplant eligible.

State News:
Georgia Asking Feds To End Oversight Of Mental Health Services
By Andy Miller, Georgia Health News, Apr 1, 2019
Early this year, in the waning days of his tenure as Georgia governor, Nathan Deal wrote the U.S. Department of Justice a four-page letter, asking for an end to federal oversight of the state’s mental health and developmental disabilities system.

The oversight role stems from a 2010 settlement agreement between the state and the Justice Department. In that landmark pact, Georgia agreed to improve conditions in its psychiatric hospitals and provide robust community services for people with mental illness and those with developmental or intellectual disabilities.

“Georgia has made tremendous improvements in the quantity, quality and availability of community-based services,’’ Deal wrote in his Jan. 8 letter, obtained by GHN through an Open Records Act request.

“Given this remarkable progress, and given the substantial compliance that Georgia has achieved, it is time to end the federal oversight’’ of how the state delivers services to people with mental health issues and developmental disabilities, Deal said.
The most recent reports by the independent reviewer of the settlement agreement, however, point to continued deficiencies in Georgia’s current delivery system.

The reviewer, Elizabeth Jones, said Georgia has made significant progress in expanding community services. But in a September report, she also noted gaps in the state’s program to provide supported housing to those people who need those services. She cited, in particular, such housing and services for people who are repeatedly in and out of jails or hospital emergency rooms, and for the homeless.

And Jones said the state isn’t meeting its obligations to provide needed services and support to people with developmental disabilities, especially those with “challenging behaviors.’’

North Carolina - Even In A Mental Health Crisis, Options Limited For Those On 'Waiver' Wait List
By Alex Olgin, NPR / WFAE Charlotte, Mar 29, 2019
When it comes to serving people with intellectual and developmental disabilities such as autism and Down syndrome, there are the haves and have nots. The state of North Carolina pays for care, but not for everyone.

There are a limited number of spots. Those lucky enough to have what’s called a waiver are entitled to a variety of in-home help. But there are more than 12,000 people who aren’t so lucky. They are on a waiting list that’s years long, and the only way to jump the list is if you’re in a crisis. 

Landon Freeman is in the land of the have nots. He is on the wait list. The 24-year-old has autism, bipolar disorder and obsessive-compulsive disorder. He's been in the Novant Health emergency room for 79 days.. Freeman was admitted January 9 after he attempted to run away from home. This is the fifth time he’s been to the hospital since around Thanksgiving. His mother, Yvonne Freeman, says his depression set in after a manic episode. 

“And then we started with the emotional issues,” said Freeman. “The crying, the really being sad.
‘My brain, my brain, my brain, is not working right. I don’t know what’s wrong with my brain.’ And then he would get so frustrated it would build and he would tantrum.”

And his parents, who are 55 and 61 and recovering from shoulder and knee surgeries, are finding it harder to physically restrain him.  
“Developmentally he functions as an 8-year-old but he’s 180 pounds so we can’t restrain him,” Freeman said. “We also can’t keep him under lock and key so he can’t run away. And that’s the real danger.”

And that’s why Landon’s parents are refusing to take him home from the hospital. State Medicaid pays for his physical care. So for 79 days, he’s spent most of his time sitting in a hospital bed.

Florida - State Proposes Medicaid Cuts To Services For Children With Autism
By Daylina Miller, WJCT News, Apr 3, 2019
The state Agency for Health Care Administration last week proposed Medicaid reimbursement reductions for providers who treat children with autism.

These reductions are for a few different behavior assessments and provider types, but most notable is a 51% cut to reimbursement rates for registered behavior technicians - the largest group of people who provide behavior analysis therapy to children on the autism spectrum.

Brittany Harger, co-owner of Creative Behavior Solutions in Largo, said the cuts may mean they, and other clinics, can no longer afford to take clients with Medicaid.
"We think that every child deserves therapy and every child deserves a chance to learn and Medicaid is not making that possible for us to do - and maintain a business,” Harger said.

Iowa - UnitedHealthcare to Leave Iowa Medicaid Program
WOWT News, Associated Press, March 29, 2019
One of the three insurance companies providing services for the Iowa Medicaid program is quitting.The Iowa Department of Human Services says UnitedHealthcare informed the state Friday it would leave the in the next several months.

DHS Director Jerry Foxhoven says the 400,000 Medicaid recipients with UnitedHeathcare will be asked to choose one of the other two companies, Amerigroup of Iowa or Centene Corp. subsidiary Iowa Total Care for coverage.

Gov. Kim Reynolds says she ended negotiations with UnitedHealthcare on Friday when the company dictated contract terms she believed unreasonable.
UnitedHealthcare says persistent funding and program design challenges made it impossible for them to provide the quality care and service they believe people deserve.

Former Gov. Terry Branstad hired private companies to manage the Medicaid program previously run by the state in 2016 and it has been the target of criticism since for cuts in services, reported slow payment of bills and doubts about its promised savings to taxpayers.

Ohio - State Agencies Seek Double-Digit Budget Hikes for Drug Treatment, Development Disability Services
By Todd DeFeo, Ohio Watchdog,
April 2, 2019
The Ohio Department of Developmental Disabilities wants to increase the pay for professionals who help Ohio residents with developmental disabilities, a move officials hope will help address workforce shortages.

The department is seeking nearly $3.3 billion for Fiscal Year 2020, an 11.7 percent increase from 2019, and more than $3.4 billion for 2021.

Turnover rates for Ohio direct care workers exceed the national average at nearly 60 percent, at least partially driven by wage concerns. The proposed budget would increase the average rate for homemaker personal care direct support professionals by 11 percent – from $11.12 per hour to $12.38 per hour – over the biennium.

“That’s the largest increase that we’ve had in a two-year period,” Kevin Miller, director of
Opportunities for Ohioans with Disabilities, told committee members.

The proposed budget also increases pay for overnight support professionals. Under the proposal, the hourly rate would increase from $6.09 to the current minimum wage of $8.55.

“You can’t reimburse providers less than they are mandated to pay,” Miller said.

The budget also allocates $267.6 million for the Opportunities for Ohioans with Disabilities Agency for Fiscal Year 2020, a 14 percent increase from 2019. The budget calls for nearly $279.5 million in 2021.

Minnesota - The Lutheran Home Association Seeks to Impact More Lives at Hope Residence through Special Bi-Partisan Bill
Belle Plain Herald, April 3, 2019

Last week, area legislators presented bills to committees in both the Minnesota House and Senate, which would increase provider rates for Hope Residence, an ICF-DD care community in Belle Plaine and other intermediate care facilities.
Senator Rich Draheim [R-Madison Lake] appeared before the Minnesota Senate Human Services Reform Finance and Policy Committee with Michael Klatt, president and CEO of The Lutheran Home Association (TLHA). Rep. Bob Vogel [R-Elko New Market] appeared before the House Health and Human Services Finance Division with Debra Wilbright, TLHA’s director of disability services. Senator Draheim told his Senate colleagues, “The exceptional level of care means that residents with high medical needs can age in place and reduces the need to admissions into long-term care facilities, crisis homes, or other facilities with very high costs and rates.”

He also noted that despite this level of care, Minnesota provides Hope Residence at one of the lowest daily rates in the state.

 In his testimony, Klatt shared Hope Residence’s unique history, the long standing national reputation of the program and the 120 year history of The Lutheran Home Association. For more than 40 years, Hope Residence has served a population where 81 percent of residents have a dual diagnosis of a developmental disability and mental illness and 84 percent have significant other medical diagnoses.

Klatt stated, “The complex diagnoses require specialized care and Hope Residence has on-site nursing for 16 hours per day and 24 hour on-call nursing services. Without these nursing services, and partnerships with medical providers, such as Bluestone, Ridgeview Medical Clinic and Mayo Clinic, many residents would be forced into state-operated settings or nursing homes.”

Despite the high levels of service Hope Residence provides, the program is one of the most efficient, lowest paid providers in the state of Minnesota. 

Klatt iterated to the committee “Hope Residence is paid $100 less per resident day compared to other providers in their regulatory class.” 

Klatt also stated, “Hope Residence has not received a rate increase since 2014 and our model of providing this high level of care relies upon charitable contributions which is not sustainable long term.”

 Klatt noted to the committee, “Our waiting list now is nearing 50 percent of our licensed capacity of 52 beds.”

Hawaii - State Criticized For Cutting Services For The Developmentally Disabled
By Brittany Lyle, Honolulu Civil Beat, April 4, 2019
Sue Callahan’s son was born with a range of intellectual disabilities. Abused as a toddler, he developed post-traumatic stress disorder.

By the time Callahan and her husband adopted him in 2010, the 13-year-old also showed signs of bipolar disorder. For years he ping-ponged between Oahu psychiatric hospitals and residential treatment programs until the state placed him in a Kansas school for people with developmental disabilities.

There, his care and behavior improved significantly, Callahan said. The Hawaii Department of Education paid for it because there were no resources in the islands adequate to meet his needs.

In October, he will age out of the Kansas school. Special education students are eligible for services through the DOE until their 22nd birthday. Then they can apply for services through the state Health Department’s Developmental Disabilities Division, which offers programming for adults.

But that process is drawn out and cumbersome, said Callahan, who remains her son’s legal guardian. She started the application process last summer and has not yet received approval.
“It seems to me, and I mean this sincerely, that they are trying their best to figure out how to reject him,” she said.

In the midst of a systemwide overhaul, Hawaii’s Developmental Disabilities Division is the subject of a surge in complaints filed with the Hawaii Disability Rights Center. The advocacy group has received about 20 complaints since late 2018 alleging a slow enrollment process and reduced individualized budgets with which participants choose services to fit their needs, according to Lou Erteschik, the center’s executive director.
In 2017, the division began to phase in a new evaluation tool called the Supports Intensity Scale to determine the level of services a person needs to succeed in different areas of life, such as learning, employment and socialization. The evaluation produces a score that corresponds to a personalized budget for services.

Adopted by 14 states and numerous counties, the Supports Intensity Scale was created by the American Association on Intellectual Disabilities as a tool for evaluating the support needs of people with developmental and intellectual disabilities. Hawaii adopted it in July 2017 and will fully implement it this summer with reassessments planned every three years.

Although widely used, the SIS has its detractors. In 2014, a lawsuit in New Mexico challenged reductions in services to people with developmental disabilities imposed by that state’s health department as a result of its use of the evaluation tool.

Callahan worries her son will be left in limbo if he is not accepted into the division’s programming by the time he becomes ineligible to continue his schooling in Kansas.

“The crazy thing is, this is someone who is the poster child for developmental disabilities,” Callahan said. “I mean, he has an IQ of 40. If you were to give him $100, he would give it to someone for a piece of candy. He is very vulnerable and it just seems like they are trying to squeeze him out of getting any services.”

VOR Bill Watch:
There are currently seven bills in Congress that would discriminate against the more disabled members of the IDD community, three in the House of Representatives with companion bills in the Senate, and one that has passed the House and Senate and is awaiting the President's signature. We are following them closely, and over the next few weeks/months may ask our members to sign on to Action Alerts to share our objections with our elected officials. (Click on each bill to view details)

H.R. 1839 - This bill has provisions to extend the Money Follows the Person Rebalancing Program , which has been used as a tool to remove people from ICFs with the intention of shuttering the facilities. MFP has been renewed for first three months of this year. The new bills would renew it for another 5 years. MFP was included in a package of 6 previously-approved healthcare bills, and passed in the House and Senate by voice votes without discussion. The bill is likely to be signed by the President soon.

H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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. Bot issues deserve clean, stand-alone bills.
What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
VOR's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Note: Mail in Registration is slow. We recommend registering online.

Additional donations to help defray the event’s costs are always appreciated

Sponsorship Opportunities Are Available!
If you are unable to attend, or if you or your family association would like to support our conference, you can help by becoming a sponsor
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