November 30, 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
Is investing in the future of their loved ones by offering to
match up to $10,000 in donations to VOR during our
2019 Winter Fundraising Campaign!

Please help us take advantage of their generous offer!

*Formerly the Woodbridge Developmental Center Parents Association

State News:
South Carolina - Mom Charged After Leaving Daughter With Special Needs At Hospital
By Teddy Kulmala, The State via Disability Scoop, November 28, 2018

A South Carolina mother is charged with child neglect after leaving her 12-year-old daughter, who has a developmental disorder that causes behavioral problems, at a hospital and refusing to pick her up, according to police.Heather Bryant, of Chesnee, was charged earlier this month with unlawful neglect of a child or helpless person, according to Maj. Art Littlejohn of the Spartanburg Police Department. She was released from jail on a $5,000 personal recognizance bond, Spartanburg County online court records show.

Police responded to Spartanburg Medical Center on Nov. 11 after someone reported an abandoned child in the hospital’s behavioral unit, according to a police incident report. A case worker with the Department of Social Services told officers she talked with Bryant on the phone, and Bryant told her she was not coming to pick up her child. The girl is 12 years old, according to Littlejohn.

Bryant told officers by phone that her daughter has Smith-Magenis syndrome, according to the report.
Smith-Magenis syndrome is a developmental disorder that can cause intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances and behavioral problems, according to the National Institutes of Health website. Behavioral problems can include temper tantrums, outbursts, aggression and anxiety, the website states.

The mother said that on Nov. 10, she was trying to change her daughter’s diaper when the girl pushed her to the ground, causing her to go to the emergency room for a bruised arm that was put in a sling, according to the report. On Sunday, she awoke to find her daughter trying to put her fingers in an electrical socket. When Bryant and her son tried to restrain the 12-year-old, the girl tried to get spoons and forks to stop them, the report states. EMS came and took the girl to the hospital.

A nurse called Bryant and asked her to come pick up her daughter, police said. She told them she was not coming to get her and asked that the girl be placed in DSS custody “because she cannot care for” the girl and worries about her daughter harming her or her other children.

Bryant also told officers she thinks her daughter is not safe in their home and “would get treatment needed under DSS care,” the report states.

Bryant faces up to 10 years in prison, if convicted.

Caring for Children with Severe Disabilities Financially Devastates Tennessee Families
By Jessica Bliss, Nashville Tennessean, November 26, 2018
First, Rondi Kauffmann heard her baby cough in the back seat. Then she heard the little girl start to choke.

That's when she started to panic. Kauffmann sped into a gas station parking lot and grabbed 6-month-old Adelaide out of the car.

The baby's eyes were glassy and unresponsive. She was not breathing.

Without another adult there to help, Kauffmann shoved her cellphone into her 7-year-old's hands with the instruction to call 911. Then she yanked a terrified college kid out his white Altima at the gas pump and told him to talk to the emergency operator.

She administered rescue breaths on her baby until the paramedics arrived.

When they did, she was forced to put Adelaide in the ambulance alone with the paramedic and follow behind in her car. 

It never should have unfolded that way, Kauffmann says. If the family had a private-duty nurse, then
Adelaide — who was born with debilitating spinal muscular atrophy — would never be without a dedicated adult to respond to her medical emergencies.

But, despite Adelaide's extraordinary needs, the little girl can't qualify for TennCare support. The Kauffmanns are a middle-class family. Their household income is too high.

In Tennessee, nearly all children with severe disabilities who come from middle- and high-income families do not qualify for the state's Medicaid program.

As a result, many parents shoulder the burden of thousands of dollars in medical bills for the therapies and vital equipment that private insurance does not cover. Others simply cannot provide their children the care they need because the cost is too much and the state will not help.

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]
National News:
Disability Groups Hope For Additional Support From New Congress
By Blythe Bernhard, Disability Scoop, November 28, 2018
Advocates are optimistic that the forthcoming shift in the balance of power in Congress could bring positive change for people with disabilities.
Come 2019, the U.S. House of Representatives will turn over to a Democratic majority while Republicans will hold their advantage in the Senate.

The new Democrat-led House essentially ends the push to repeal the Affordable Care Act, or ACA, experts said. Advocacy groups have fought to preserve the law and its insurance protections for people with pre-existing conditions and expansion of Medicaid coverage to more families.

“We hope to be able to move from a mainly defensive posture back to a more affirmative agenda,” said Julia Bascom, executive director of the Autistic Self Advocacy Network. “The voters sent a clear message that they want Congress to move on from ACA repeal, stop the attacks on Medicaid and other lifeline programs, and get back to work. We have a lot of stuff we’d love to be able to work with them on.”

A top priority for disability advocacy groups is the Empower Care Act, which would extend funding for the Money Follows the Person program. The Medicaid initiative helps older people and those with disabilities leave nursing homes and institutions in favor of community-based housing. More than 88,000 people have moved into group homes or other community settings through the program since it started in 2005.
The bill to renew Money Follows the Person, which expired in 2016, passed through a House committee in September and is awaiting a full vote in the House along with a similar bill in the Senate. States have been running out of money to fund the program, and advocates are hopeful it will be approved before the new year.

“We are pulling out all of the stops to get MFP passed in the lame-duck session,” said Sarah Meek, director of legislative affairs for the American Network of Community Options and Resources, or ANCOR. “We’re hoping that the environment is right for more incremental, good changes for the disability sector.”

Meek said the Money Follows the Person renewal could be advanced through a merger with the ACE Kids Act — another bill that was recently approved by a House committee — which would help coordinate care for children with complex medical needs who visit specialists at different hospitals or in different states.

The ACE Kids Act is supported by the National Down Syndrome Society, Autism Speaks and the Autism Society.

New Government Report Suggests 1 In 40 Kids Have Autism
By Blythe Bernhard, Disability Scoop, November 26, 2018
National survey results show as many as 1 in 40 U.S. children have been diagnosed with autism, continuing an upward trend.

Researchers estimate 1.5 million American children ages 3 to 17 have been diagnosed with the developmental disorder, for a prevalence rate of 2.5 percent. The figures published online Monday in the journal Pediatrics come from data collected through the 2016 National Survey of Children’s Health, a government survey of parents of more than 50,000 children across the country.

As part of the survey, parents were asked if a doctor or other health care provider had ever told them that their son or daughter had autism and, if so, they were asked if the child currently has the condition.

“It is difficult to pin down an exact number. We don’t have a biological marker for autism,” said Michael Kogan of the federal Health Resources and Services Administration and lead author of the
new report. “We know that in terms of having a major condition like autism, parents are usually pretty good reporters compared to medical records.”

While the government tracks autism prevalence through several methods including the parent survey, the official prevalence rate is based on data collected through the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network.

In April, the CDC reported from that data collection that autism affects an estimated 1 in 59 children based on medical and educational records of thousands of 8-year-olds at multiple sites in the network.

A Unique Opportunity!
HHS Is offering opportunities to serve on two of its councils. Submissions are due on December 3, 2018, so if you are interested, please act quickly!
Solicitation for Nominations To Serve on the Family Caregiving Advisory Council

The Secretary of Health & Human Services (Secretary) seeks nominations for individuals to serve on the Family Caregiving Advisory Council.

The Family Caregiving Advisory Council (the Advisory Council) is authorized under Section 4 of the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2017 (Pub. L. 115-119), commonly referred to as the “RAISE Family Caregivers Act.” The Advisory Council shall study and prepare findings, conclusions, and recommendations to the Secretary of Health & Human Services on: (a) Evidence-based or promising practices and innovative models for the provision of care by family caregivers or support for family caregivers; and (b) Improving coordination across federal government programs. The Advisory Council also will advise and provide recommendations to the Secretary of Health & Human Services on recognizing and supporting family caregivers.

Solicitation for Nominations To Serve on the Advisory Council To Support Grandparents Raising Grandchildren

The Secretary of Health & Human Services (Secretary) seeks nominations for grandparents who are raising grandchildren and older relatives who are caring for children to serve on the Advisory Council to Support Grandparents Raising Grandchildren.

The number of grandparents and other older relatives who are caring for children is significant and growing, in part due to the opioid crisis. Although caregivers' lives are enhanced by the experience, providing full-time care to children can decrease caregivers' abilities to address their own health and well-being needs. Recognizing that these caregivers would benefit from improved coordination of resources intended to support them, as well as better dissemination of information about those resources, the Supporting Grandparents Raising Grandchildren Act (Pub. L. 115-196) established an Advisory Council to Support Grandparents Raising Grandchildren The Advisory Council will identify, promote, coordinate, and disseminate to the public information, resources, and the best practices available to help grandparents and other older relatives both meet the needs of the children in their care; and maintain their own physical and mental health and emotional well-being.

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

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VOR's 2019

June 8 - 12, 2019
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