June 7, 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

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

~ Registration includes a one-year membership in VOR ~

Conference Speakers - June 9th Legislative Initiative:

Melissa Stone - Director, Division of Developmental Disabilities Services, Arkansas Department of Human Services

Amy Lutz - National Council on Severe Autism, EASI Foundation

James Edmondson, M.D. PhD. On Medicaid Managed Care
Can't Attend the Conference This Year?

You can help by donating to VOR
or by becoming a Legislative Initiative Sponsor
Welcome to the Special Amtrak Edition of the Weekly Newsletter!

Today's newsletter will be shorter than usual, as it is being written on the train to Washington, D.C. for our annual conference.

We would like to thank everyone who has contributed to this year's conference. It's going to be a terrific event.

Special thanks to all those who are attending the conference, and to all of those who contributed to help them attend.

National News:
Autism Insurance Mandates Increasingly Extend To Adults
By Blythe Bernhard, Disability Scoop, June 3, 2019
While nearly every state requires insurance companies to cover autism therapies, most cut off mandatory coverage beyond childhood.

Age caps for people with autism are arbitrary since “they don’t suddenly become cured at age 18 or age 21,” said Lorri Unumb, CEO of the Council of Autism Service Providers.

This year, however, several state legislatures including New Mexico, New York, Utah and Virginia removed age restrictions on insurance coverage. About a dozen states now require coverage regardless of age.

Advocacy organizations like Autism Speaks, where Unumb worked until recently, have pushed
legislators to make the changes. The trend moves the states into compliance with federal parity laws which require insurance companies to provide the same level of benefits for mental health care as medical or surgical care, Unumb said.

“It’s just relatively clear when you read the federal law, there can be no quantitative treatment limitations, and an age limit I would argue is a quantitative limitation,” she said.

State News:
Pennsylvania - Letter to the Editor: Why is the State Closing Centers for People with Intellectual Disabilities?
By Minerva Gordon, PennLive, June 4, 2019

Reading an article from the Pittsburgh Post-Gazette my heart started to beat fast with the headline, “Fate of state centers for people with intellectual disabilities debated in Harrisburg.”

The reasons parents of the severely mentally disabled do not use the centers for their children include: they are closed admissions, bad press and the need to go through the court system, which is expensive.
Every year, the state complains about the long list of people with disabilities waiting for the state to provide funding for their care. Why does the state want more added to their list if they can’t take care of 13,000 clients in the waiting list by closing centers for people with intellectual disabilities?

The land where Ebensburg Center is located, the way I understand it, was given by a farmer for the care of children with various health needs. I don’t know if the state bought it or for how much. But it is interesting that 70 acres of land along Route 22 could be the reason for the lawmakers to be looking at prime commercial land to sell.

They already sold land to two businesses from the Edensburg Center campus. When it was sold, did they put the money towards the upkeep of the residents of Edensburg Center, or did the money go to Harrisburg?

When they say that it is expensive to keep the centers open, they are right. We as parents that are on Social Security pay half of our Social Security for the care of our child, and we are glad to do so.
The centers now house the profoundly mentally disabled. Those living in the centers have complex physical issues and behavioral problems, so the centers are less restrictive, more hospitable, better equipped and better staffed to satisfy their needs. This is much better than putting them in the house next door.

The centers are a success story of the best way of taking care of the profoundly mentally disabled: 24-hour care with doctors and nurses on call. The centers offer education according to their mental age, work if they can do it, room and board, activities, dentist, physical therapy, RN’s, speech therapist, psychologist, church, etc.

Even in the Olmestead decision, it is written, “ . . . some individuals are not prepared for the risks and exposures of the less protective community."

Virginia - Reversal of Medicaid Policy is ‘Good News,’ Advocates Say
By the Editoral Board, Freelance-Star. June 2, 2019

In mid-May, the Virginia Department of Medical Assistance Services, or DMAS, sent out letters to families, telling them it had reversed a policy put in place in September. That policy had required the state agency, which oversees Medicaid, to use a different evaluation to determine how much assistance the most severely disabled need with daily living activities or nursing services.

Patients had to be evaluated based on criteria in the Early and Periodic Screening, Diagnosis and Treatment benefit. It relied heavily on "medical necessity," meaning that a separate doctor looked over the reams of paperwork and decided how many hours Medicaid would pay personal-care attendants to help those individuals with eating, dressing and other life skills.

"Nine times out of 10, those plans were cut" in an effort to reduce costs, Gratz said.

And, as Louisa County parent Amy Fields stated in a March story in The Free Lance -- Star, "a physician who has never laid eyes on my child" made the decision to reduce the waiver, or services her daughter received, from 80 hours to 49 hours a week.

In wake of the reversal, decisions about personal- care hours will once again be based on services the patients need to stay in their homes and communities, according to a letter from DMAS. The change applies only to services provided through the CCC Plus Waiver for members under age 21 and for plans put in place after May 1.

But the change in policy doesn't mean that Medicaid recipients immediately had their hours restored for personal-care attendants. Fields, whose 7-year-old daughter, Cary Lynn, has such severe issues she qualifies for placement in a nursing home, said she's "gotten no reassurance that the hours will be restored" or any type of time frame.

"DMAS doesn't talk to us or help us understand what we need to do on our part," Fields added.

In 2017, Virginia joined other states nationwide in having its Medicaid waiver programs operated by private health-insurance companies. Virginia uses six managed-care organizations, or MCOs, and the differing regulations in each company contribute to the ongoing confusion, according to advocates of the disabled.

There are eight different types of Medicaid waivers, meant to keep residents out of institutions and in their communities. There are 37,671 Virginians who receive the waivers, according to DMAS.

Arkansas - Gauge Cuts Medicaid Assisted-Living Eligibility Rolls
by Andy Davis, Arkansas Democrat-Gazette, June 3, 2019

Large numbers of elderly Arkansans are being told they no longer qualify for help from state Medicaid to pay for their care at an assisted-living place as a result of an eligibility assessment tool the state began using this year, facility owners say.

Among those found to no longer qualify is Bobbie Brown, 86, who has lived at the Hope’s Creek assisted-living facility in Van Buren since September 2015.

Both Brown and her daughter, Kathy Davern, said they don’t understand why she was found to be ineligible this year after being found eligible in previous years.

“I go to bed and I think about it, and I can’t hardly sleep,” Brown said.
Based on a tool developed in Minnesota, the Arkansas Independent Assessment measures the needs of Medicaid recipients based on a series of up to about 400 questions.

Under a contract with the state Department of Human Services, nurses with Optum Government Solutions, a division of Minnetonka, Minn.-based United Health Group, began using the tool this year to help determine eligibility for two programs serving elderly or disabled low-income Arkansans.

One is the assisted-living program, which serves up to 1,200 people in 60 facilities around the state. The other is ARChoices, which provides in-home care, including help with daily living tasks such as dressing and bathing, to about 8,800 Arkansans.

Previously, Human Services Department nurses performed assessments for the two programs using a different tool, known as the ArPath.

Of the 331 people who have been assessed for eligibility for the assisted-living program this year through Thursday, 146, or 44%, were found to be ineligible, Mark White, deputy director of the department’s Aging, Adult and Behavioral Health Services Division, said in an email.

Those found to be ineligible included 78, or 47%, of the 165 residents who have been assessed this year who had previously been found eligible after assessments using the ArPath.

Similarly, 951, or 31%, of the 3,047 Arkansans assessed for eligibility this year for ARChoices were found to be ineligible.

That included 27% of those who were assessed who had been previously found to be eligible and 37% of new applicants.

Delaware - Adult Caregivers say Hike in State Funding ‘Sorely Needed’
By Matt Bittle, Delaware State News The Associated Press, June 02, 2019

With most of the budget in place, advocates and caregivers for individuals with intellectual and developmental disabilities are worried. Not included thus far in the spending plan for the fiscal year that begins July 1 is the monetary increase the caregivers — more formally known as direct support professionals — are looking for.

That, those in the field say, is a huge issue.

"If you talk to any of these families, their biggest fear is these communities services won't be sustainable. And I think a lot of people believe the ultimate outcome could be institutional services could have to be created to meet the need," said Thomas Cook, executive director of the Ability Network of Delaware.

For about 15 years, the state has subsidized services for people with developmental disabilities. But the rates have seen little change, Mr. Cook said.

In 2018, the General Assembly passed legislation calling for phasing in increases for caregivers so that over a three-year period the reimbursement would grow from 75% of the hourly market wage established in a 2014 study to 100%. But while supporters considered the measure's passage a triumph, the bill does not bind the General Assembly to fund the increase — and that's not the only problem.

A study released earlier this year reveals the need is bigger than was thought: $42.1 million, not $22.7 million, over three years would be required to achieve parity. The need is technically, according to the study, about $93.6 million, but state spending triggers a federal match exceeding 1:1, so Washington would pick up the majority of the tab for direct support professionals if Delaware offers an initial investment.

The current budget contains more money for caregivers, and Gov. John Carney's budget proposal includes an additional $2 million that would bump the state funding level from 81.2 to 83.3% of the 2014 market rate. Under the updated rate included in the 2019 analysis, however, even with that $2 million, direct support professionals would end up at just two-thirds of the benchmark.

At 81.2% of the 2014 rates, direct support professionals make $10.35 per hour — $1.60 more than the state's minimum wage. Fully funding providers to 100% of the 2019 study's rates would bring them up to $14.11 an hour.

Direct support professionals help adults who have conditions such as autism, Down syndrome or cerebral palsy. They assist recipients in finding employment or even perform basic functions like feeding and bathing them.
It is, many speakers said in a February budget hearing, a demanding job but also a rewarding one.
But one thing it is not is lucrative.
Many caregivers work multiple jobs to make ends meet, and turnover is tremendous: 42% among Kent-Sussex Industries' 30-plus direct support professionals last year, according to KSI CEO Craig Crouch.

Reminder: In recent years, California has been closing all of its state-operated ICFs and moving the residents to group homes under the HCBS waiver.
California - Sacramento Should make a Priority of Developmental Disability Services: Editorial
Editorial Board, Orange County Register, June 5, 2019
As lawmakers in Sacramento race the clock to pass a budget to send to the governor, the quality of life for hundreds of thousands of Californians with intellectual and developmental disabilities hangs in the balance.

Under state law, Californians with qualifying developmental disabilities — these include epilepsy, autism, cerebral palsy and intellectual disabilities — are entitled to receive services and certain types of support in the least restrictive environments possible.

In 1969, California passed the Lanterman Act. That led to a dispersed system of community service providers who are paid by the state. The Department of Developmental Services (DDS) system funds services by over 100 different categories of providers, including residential and day programs, transportation and employment.
However, the process of setting the rates that providers are paid is “complex, outdated and non-transparent,” according to the state’s Legislative Analyst’s Office.

The rates have failed to keep up with costs incurred by providers, particularly a higher state minimum wage. A draft rate study requested by the Legislature found that the system is underfunded by $1.8 billion. In practical terms, that means many providers are closing their doors or are on the verge of doing so. Not even a nonprofit organization can stay open for long with a cap on revenue but not on costs.

Time to Fulfill our Promise to Californians with Developmental Disabilities
By State Senator Henry Stern, Los Angeles Daily News, June 4, 2019
Until last year, for the past two decades, “John,” a 43-year-old whose developmental disabilities prevent him from living independently, the way so many of us take for granted, relied on PathPoint, a local non-profit, as his lifeline.

Every day, John would take the PathPoint shuttle from his home to the PathPoint service center in Chatsworth. Here, John made lifelong friends, learned to take turns in conversations, finish tasks, and even take public transportation on his own. These skills enabled him to get a job at Wood Ranch BBQ, where he made table arrangements, trained as a volunteer at the local Veterans Administration Medical Center, and even pursued his artistic talent at a local community center, where he takes ceramics and painting classes.

John’s growth was rooted in a promise we made when the California Legislature passed the Lanterman Act in 1973, guaranteeing every Californian the “right to dignity, privacy, and human care…[and] to make choices in their own lives.”
Due to recent budget cuts, we have broken that promise. The programs that support John and hundreds of thousands of other Californians struggling with cerebral palsy, Down Syndrome, autism, epilepsy and other developmental and intellectual disabilities have been slashed and shut down.

Between 2011 and 2018, 94 work and day programs have closed, along with 928 homes offering residential care, leaving 4,800 Californians like John with few options for care. One third of the 150,000 staff have left the profession due to substandard wages, and another third have to work a second job to avoid falling into poverty as they do the job they love.

VOR Bill Watch:

H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

H.R. 2417 - 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. 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
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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