October 26, 2018
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
Please support H.R. 6786

H.R. 6786 - A bill to protect the interests of each resident of intermediate care facilities for individuals with intellectual disabilities in class action lawsuits by federally funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility.

This is VOR's bill, and we have introduced this legislation over the course of several sessions of congress. Our sponsor, Bob Goodlatte (R-VA) is in his last term in Congress, and the bill will expire at the end of this session. Please contact your member of the House to ask them to cosponsor this important bill.

We will begin another round of this campaign on Sunday night. In the meantime, if you have not yet taken action, please click below to be a part of this important effort.

VOR & You:

The Value of VOR Membership

VOR is a national, nonprofit 501(c)(3) organization advocating for high quality care and human rights for all persons with intellectual and developmental disabilities. For 35 years, VOR has been the only national grassroots advocacy organization supporting a full continuum of care options for people with intellectual disabilities and developmental disabilities, and their families.

VOR is 100% privately funded and receives more than 95% of its financial support from families of individuals with intellectual and developmental disabilities.

National News:
Disability Groups Step Up Efforts To Reach Minority Families
By Rita Price, The Columbus Dispatch & Disability Scoop, October 16, 2018
The therapy-play group for young children with Down syndrome sounds like a good opportunity, so Liasun Hodges plans to take 6-month-old Damani to meet with other parents and kids.“If I feel like it’s beneficial for my child, I’m going to go,” she said.

Hodges wants to do all she can to help Damani thrive. But the 25-year-old will have to deal with her own unease when she drives across town from her inner-city neighborhood to the gathering in Upper Arlington, where she might be the only mom in the group who’s not white and living in the suburbs.

Having a son or daughter with the genetic condition isn’t the only common ground that matters, Hodges and others know. Support organizations often fall short in reflecting the
diversity of Americans with disabilities such as Down syndrome, which is just as likely to occur in blacks as in whites.

“We’ve had some really honest discussions about what we could be doing differently,” said Kari Jones, president and CEO of the Down Syndrome Association of Central Ohio. “We know that Down syndrome doesn’t discriminate. Yet our membership right now is about 5 percent African-American, whereas 25 percent of the community is African-American.”

Companies Under Fire For Hawking Fake Autism, Cerebral Palsy Treatments
By Shaun Heasley. Disability Scoop, October 22, 2018
Federal officials are taking action against a doctor and two companies for charging thousands of dollars for therapies they “deceptively” claimed could treat autism, cerebral palsy and other conditions.

The Federal Trade Commission said that Dr. Bryn Jarald Henderson and his companies — Regenerative Medical Group and Telehealth Medical Group — marketed stem cell therapy injections as a treatment for multiple conditions even though there was no evidence to support the claims.

On a website where the treatments were promoted, the FTC said that Henderson and his
companies went so far as to say the injections could “reverse autism symptoms” and restore vision in those who are blind.

In addition, the complaint alleges that Henderson marketed the therapy for treatment of cerebral palsy, Parkinson’s disease, multiple sclerosis, macular degeneration, osteoarthritis, strokes, chronic kidney disease and heart attacks, all without any evidence.

As Demand For ABA Therapy Increases, Investors Buy In
By Courtney Perkes, Disability Scoop, October 23, 2018
Autism therapy is attracting significant attention from private equity firms, a trend that could fund rapid expansion of clinics, but is also raising concerns about quality of care.

Investors say the rising prevalence of autism, as well as increased insurance coverage for applied behavior analysis, or ABA therapy, is driving their interest. Some autism advocates welcome an expansion of services, while also cautioning that unchecked growth could cause lapses in training or oversight.
“This is not necessarily a bad thing that private equity is getting involved,” said Thomas Frazier, chief science officer for Autism Speaks. “If we can standardize things, private equity may bring in the financing that allows us to expand. If we do things right, we could actually create a market that serves individuals and families better.”

State News:
New York - Innovative Housing Idea for Seniors who Care for Adult Children with Disabilities
By Kristin Dalton, Staten Island Advance, October 25, 2018
Housing for individuals with intellectual and developmental disabilities has been scarce for years as the need continues to grow across the borough.

In 2015, there were over 50,000 New Yorkers with developmental disabilities living with a relative caregiver, many of whom are 60 or older. That number is likely much higher in 2018.

The Advance covered the crisis in-depth with its series “Dignity in Danger,” and editorialized about the need for innovative housing solutions for the growing crisis many Staten Islanders, and New Yorkers, face.

Diane Campione, special needs program coordinator for the New York Public Library, and Diana Thompson, lifestyle and engagement director at The Brielle, hope to get a pilot program off the ground that would ease the burden for seniors who are caring for a disabled loved one.Campione is the parent of a 22-year-old son with high-functioning autism.
The Brielle, an assisted living facility which has a capacity of 188 that currently operates at 96, is looking to start co-habitating seniors who are caring for an adult child with disabilities in the facility.

“This would be a unique option to keep families together and it has not been available before,” Campione said.

“When you’re at the age when you can no longer take care of the family member with a disability and looking to go into assisted living, you’d have the option of bringing the individual that you’ve kept home with you,” she said.

Wisconsin - Office of the Inspector General Report:

Wisconsin Did Not Comply With Federal Waiver and State Requirements at all 20 Adult Day Care Centers Reviewed
October 15, 2018
Wisconsin did not comply with Federal waiver and State requirements in overseeing centers that serve vulnerable adults who receive services through the Family Care program (the program). All 20 of the centers we reviewed did not comply with State certification requirements. In total, we found 208 instances of noncompliance with health and safety and administrative requirements.

Wisconsin said that instances of noncompliance occurred partly because of low staffing levels that did not allow State surveyors to make recertification visits every 2 years. Additionally,
Wisconsin officials confirmed that the certification checklist was outdated and lacked clarity on certain requirements, and certification requirements were not in the Wisconsin Administrative Rules. Wisconsin also said that there was minimal attendance by center personnel at State- or trade association-sponsored voluntary training programs. Finally, center personnel indicated the need for improved State agency communication and more guidance related to the specific center certification requirements.

Iowa - UnityPoint Health-Cedar Rapids to Close Longtime Facility
By Michaela Ramm, The Gazette, October 24, 2018
UnityPoint Health-Cedar Rapids has announced it will discontinue operations for its group living facility for intellectually disabled individuals early next year.New Horizons anticipates a closure on Feb. 1 as St. Luke’s officials prepare to vacate St. Luke’s Living Center East, the building at 1220 Fifth Ave. SE that the program has occupied since the mid-1970s.

The 26-bed program is a group living environment for individuals with moderate to severe and profound disabilities that require nursing supervision and structure.

The facility is a designated Intermediate Care Facility for the Intellectually Disabled, a Medicaid benefit that enables states to individualize health care and rehabilitation services as an alternative to home- and community-based service waivers.
“These developments, coupled with the knowledge of the state’s preference and original intent for Intermediate Care Facility for the Intellectually Disabled programs such as New Horizons to transition residents to a homelike setting environment rather than a group institutional living environment factored into the decision to close the facility,” Corizzo said in a statement.

Corizzo said the closure is not related to Medicaid reimbursements.

There are currently 25 residents in New Horizons.

New Jersey Department of Human Services Hikes Wages for Direct Support Professionals
Cape May County Herald, October 22, 2018

The New Jersey Department of Human Services Oct. 22 announced wages have increased for the direct support professionals who work with individuals with intellectual and developmental disabilities.

According to a release, Gov. Phil Murphy and the Legislature identified $32 million in additional state and federal funding to support higher wages for the direct support professionals.

The increase represents an average wage increase of about 4.5 percent.

“Direct support professionals play a crucial role in our effort to assist individuals with disabilities live successfully in our communities,” stated New Jersey

Department of Human Services Commissioner Carole Johnson. “Their dedication leads to better lives for so many New Jerseyans, which is why we’re pleased to be able to recognize their commitment. We value the work of our direct support professionals and all that they do for individuals with disabilities.”

“The work performed by direct support professionals is truly a labor of love," stated state Sen. Troy Singleton. "They care for those with disabilities, advocate on their behalf, and help integrate them into their communities. For these reasons and thousands more, they deserve - and have rightfully earned - a higher wage for the work that they do each and every day. I am proud to have led the effort to secure funding for this wage increase."

Maryland - Parents Struggle To Find In-Home Nurses
By Andrea K. McDaniels, The Baltimore Sun,October 26, 2018
Jill Pelovitz depends on an army of in-home nurses to keep her teenage daughter alive.Fourteen-year-old Nadiya suffers from a rare genetic disorder that causes life-threatening seizures, breathing problems and other complications. The teenager, who needs help with basic life skills such as dressing and walking, requires constant monitoring in case she has a seizure, especially at night when she is sleeping in their Severn, Md., home.

But finding nurses to assist families who have children with disabilities and other relatives at home can be difficult, largely because such nurses aren’t paid enough in Maryland or even as much as in neighboring states, according to the families and companies that place nurses. They are pushing to increase how much the nurses are reimbursed under Maryland’s Medicaid program, which covers most of the costs of at-home nursing care for those with disabilities.

“We are always wondering at what point a nurse is
going to go somewhere else where they can make more money,” Pelovitz said.

Most at-home nurses are licensed practical nurses, a designation that doesn’t require a bachelor’s degree. In Maryland, such nurses make significantly less caring for someone in their home than working at a nursing home or hospital — or in some neighboring states. Medicaid covers in-home licensed professional nurses at a rate of $35.20 per hour in Maryland, compared with $46.14 in Delaware and $50 per hour in Washington, D.C., according to an analysis by BAYADA Home Health Care, a placement firm that is lobbying to increase the rates in Maryland.

Montana - Settlement Reached After Student Reportedly Left In Basement
By Tyler Manning, Independent Record, via Disability Scoop October 26, 2018

Settlements totaling more than $1 million have been reached in the case of a 16-year-old Montana student with disabilities who was allegedly removed from his school, placed in a church basement and told to watch DVDs and sort nuts and bolts.The student and his family will receive around $1,141,000 in compensation from the Montana Office of Public Instruction and the rural school district where he was enrolled.

The student is referred to only as R.C. in legal documents to protect his identity. Because the student goes to school in a rural part of Montana, the school district is also unnamed in court documents to avoid revealing his identity.

Montana Recieves $800,000 Federal Grant for Respite Services
By John Riley, KTVH, October 23, 2018
Governor Steve Bullock and the Montana Department of Public Health and Human Services (DPHHS) gathered in the State Capitol Rotunda on Tuesday October 23 to announce a $800,000 federal grant for respite services in the state.Established in 2015, the Montana Lifespan Respite voucher program provides family caregivers of children or adults with special needs a temporary break from their duties by covering the cost of short in-home care, companionship or outings.

The maximum amount allowed through the voucher program is $600 per calendar year.
At Tuesday’s event Governor Bullock praised the effort of respite staff and success off the program has seen in the Big Sky state.
“Over the years we’ve built a program that has built a program that offers flexibility to clients tochoose who they want to come into their home to provide respite,” said Bullock. “This is a solution that works for Montana especially in our rural areas.”

Bullock when on to say the grant with only further to strengthen DPHHS respite services and the Montana families who are fundamentally in need of them.

Virginia - Federal Changes will Cause MARC Workshop to Close
By Holly Kozelsky, Martinsville Bulletin, October 21, 2018
Margaret “Tish” Smith, 56, is almost as busy now as she was before she retired.

Smith worked for 30 years in the MARC sheltered workshop, and now she spends her days doing crafts and activities in the workshop’s sister program, Day Support Services. Both programs are located off Church Street Extension in Martinsville.

Her cousin Charlotte Ann Pigg, 53, is still working at the workshop but looks forward to joining Smith one day. Pigg won’t have to wait long: The sheltered workshop will be closed on Dec. 21 due to federal funding and regulatory changes, according to Melody Justice, MARC Workshop’s co-director over Day Support.
MARC Workshop has been in operation for 49 years, and the closing will leave 17 people without that daily structure and socialization, Justice said. Eight people attend the day support program during the week, most, like Smith, having made the move from MARC Workshop.

It’s not as simple as just walking from one building to the next, though. The clients have to go through a lengthy assessment and funding process through outside agencies, and day support is only one of the possibilities for them.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
VOR Supports H.R. 6611

This bill would define individuals with intellectual and developmental disabilities as a medically underserved population, and appropriate more funds to their care. The bill will expand and improve health care and dental services for people with I/DD. Stay tuned for more information on this bill.

VOR Supports H.R. 3325

Advancing Care for Exceptional Kids Act or the ACE Kids Act

This bill amends title XIX (Medicaid) of the Social Security Act to establish a state Medicaid option to provide for medical assistance with respect to coordinated care provided through a health home (i.e., a designated provider or team of health-care professionals) for children with medically complex conditions. A state shall make payments for such health-home services regardless of whether they are provided through a fee-for-service or managed-care system. For an initial period of eight fiscal-year quarters, the federal matching rate applicable to such payments shall be increased by 20 percentage points, not to exceed 90%.

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VOR's 2019

June 8 - 12, 2019
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