A Bridges Story: JC’s New Ride
Jonathan L., known as JC to family and friends, was diagnosed with Duchenne Muscular Dystrophy at a young age.His parents, Sandra and Eric, knew their boy was in for a fight, but they planned to do whatever they could to make JC’s life as happy and normal as any other kid’s.What they didn’t expect was that they, too, would experience many physical difficulties along the way.
JC’s rapid growth had recently become a huge obstacle for the family.In order to transport their son anywhere in their vehicle, both parents had to lift him from his wheelchair and into their large SUV, both coming and going, at every stop.It had become so physically taxing that the family began limiting their outings.
Last year, JC’s former RHA Howell CAP/C case manager submitted a plan of care revision for a vehicle modification request. However, the Division of Medical Assistance (DMA) denied their request because of the age of their vehicle.
Disheartened but not discouraged, his parents vowed to find a way.After saving enough money for a newer used vehicle – a minivan – Sandra approached RHA Howell‘s Christy Fitzgerald about trying again. As JC’s new CAP/C case manager, Christy had become well aware of the serious difficulties the family was experiencing. The thought of him being limited to only home and school was unacceptable.
So, with renewed vigor, Sandra and Christy gathered every piece of vehicle documentation they could think of, including the required documents, but also anything they felt might assist DMA in making a decision to approve the modification.
Sandra and JC with his new “ride.”
Mr. Warren shared the joy the family expressed when he demonstrated the equipment to them. “I know I do this for a living,” Mr. Warren said, “but I do it for another, more important reason. That reason was clear to me when JC, with a great big smile on his face, said, ‘Now my Mom and I can go wherever we want, even if Dad is not home!’”
Mr. Warren expressed his appreciation for being given the opportunity to help the family in this very tangible way.
When she arrived at the client’s home, Christy saw that JC was already seated in the family van. “We’re headed to the library,” his mother said. “We cried when we put him in this morning. It’s like a new life for JC. Thank you all for working so hard to obtain this for us. We are so grateful!”
Read Full Post | Make a Comment ( 1 so far )Proposed Medicaid Reduction Puts Children with Special Needs and Public School Systems Across The State in Serious Jeopardy
January 11, 2010 (ANSON COUNTY, NC) — In Anson County, North Carolina, one of the most economically challenged areas of the state where the nearest town of any size is at east an hour away, 66 very young children with special needs are receiving free developmental intervention services at the Anson Children’s Center, the only five-star Community Based Rehabilitative Services (CBRS) Center for children birth to preschool (0-3) in Anson County. These early intervention services enhance the children’s cognitive, physical, behavioral, self-help, social-emotional, and language skills – essential skills these children must have before they enter the state’s public school system. Their parents or guardians are also receiving training so that they know how to care for and assist their children with special needs.
Because of this service, these children will require less special education and other treatment and habilitative services in school, they will be retained in their school grade less often, and in some cases they will become indistinguishable from their classmates.
But all of that could go away this summer. The NC Division of Medical Assistance (DMA) has decided to delete Community Based Rehabilitative Services as a Medicaid payable service as of June 30, 2010 – a move that follows NC General Assembly directives. That means Medicaid will no longer reimburse the cost for the special therapists and other staff that work in community-based centers such as Anson.
Without Medicaid reimbursement, the Anson Children’s Center and 252 other centers like it across the state are in jeopardy of closing, according to Sam Hedrick, president of RHA Howell, Inc., the not-for-profit organization that operates the Anson Children’s Center. And the effect on the public school system will be devastating, she added.
“If centers like Anson stop operating, the public school system will have to dramatically increase programs to assist these children who will be coming to them with none of the skills they learn in community-based, early intervention programs,” Hedrick said. “This is clearly a case of penny wise and pound foolish.” School systems are struggling financially now. They simply will not be able to afford to try to catch all of these children up. “
Millicent Williams, director of the Anson Children’s Center, pointed out specific children who receive services, such as Damarion, who is autistic; William, who is developmentally delayed in speech, language, cognitive and gross motor skills; Aaliyah, who needs help with gross motor skills and balancing; and Tanasia, who is blind, deaf and unable to walk. These children are two years of age or younger.
“I am extremely devastated about Medicaid’s decision,” she said. “What will happen to our infants, toddlers, and preschoolers at Anson? Has anyone really stopped to think about the wellbeing of these children? Who will provide the safe, nurturing and quality care for all of the children being affected across the state?”
A petition to the NC Division of Medical Assistance, NC Department of Public Health and NC Children’s Development Services is currently circulating, written by Brianna Kelley an early intervention therapist in Pender County. It has received nearly 800 signatures thus far.
The opening statement reads:
“The recent decision made by the Division of Medical Assistance (DMA) to delete Community based rehabilitative service (CBRS) as a reimbursable service effective June 30, 2010 is a travesty. This decision demonstrates a total disregard for what is in the best interest of disabled individuals, families and the public school systems in the state of North Carolina.”
Hedrick, Williams and other members of the RHA Howell team are working on strategies to combat these cuts before the June 30 deadline. They’re also planning to team up with other organizations that operate community-based rehabilitative services center across the state.
Hedrick said she is aware that some state representatives are opposed to the Medicaid cuts, referring to an email from Representative Pryor Gibson. Gibson represents Anson and Union counties. In his email he pointed out that state Senator William Purcell, a retired pediatrician from Laurinburg, “was raising Cain about the cuts during the budget fight in [the] July conference report…. but we could not get any more money designated…fyi it is going to be some worse in ’10….”
“The good news is that we are getting through to Senator Purcell,” Hedrick said. “The not-so-good news is that he predicts further budget cuts in 2010.”
The Raleigh News & Observer recently reported, “State officials must figure out a way to replace the service despite the elimination of federal money, because federal education laws require states to help disabled children. So any future program would likely be trimmed to narrow the kinds of help provided and serve fewer families.”
To the families of these children and the people across the state who serve them, including the staff at Anson Children’s Center, this is unacceptable.
Sidebar:
THE FACES BEHIND THE ISSUE: HOW TWO CHILDREN HAVE FLOURISHED THANKS TO COMMUNITY BASED REHABILITATIVE SERVICES
Coleman
by Becky Lansing, M.ED, Corporate Education Specialist, RHA Howell, Inc.
No one plans to have a child with special needs. But having a child with a disability is a reality for families throughout the state of North Carolina, across the country, and around the world. Families everywhere face the challenges of meeting the unique needs of their child, beginning with where to turn for help.
Coleman has Down’s Syndrome. His mother talked about how they coped with his needs.
“It was very overwhelming — even though we knew, before he was born, there was a small chance he would have Down’s. We knew he was going to need more than a normal child. I was so lost. But the hospital referred us to the CDSA (Children’s Developmental Services Agency). He started getting Community Based Rehabilitative Services (CBRS) when he was 3 months old.”
Now an active 3-year old who runs, climbs, talks and is “into everything,” Coleman has no difficulty keeping up with his same-age peers. Coleman’s family credits the individualized services Coleman received through CBRS. Collaboration with his teachers and therapists kept everyone focused on the skills Coleman needed to practice.
There is still ground to be gained, but Coleman’s mother is proud of the progress her son has made. She reports that he walked at two years of age, and still may be a little behind—but not much.
“I hate that the (CBRS) services might be discontinued,” she said. “There are so many children that need these services.”
Without CBRS, she believes Coleman would need far more support than he does now.
Destinie began receiving CBRS as an infant with medical and developmental concerns. Now 3 years old, her family and support team agree that she has made good progress as a result of the services she’s received.
Destinie
Destinie attends an inclusive education program where it is reported that she is “happy and confident.” Her great-grandmother recalls that as an infant, Destinie was content to just sit, and would not try to do anything. She was delayed in language and motor skills.
Now, her participation and socialization skills are appropriate for her developmental level, and she continues to make progress with school readiness skills.
“She walks, and talks, and sings her ABC’s and counts,” reports her great-grandmother, her primary caregiver. ‘We are so grateful for the services she received.”
Without CBRS, it is unlikely that either Coleman or Destinie would have had educational services until their third birthdays—three years of missed opportunities to make a difference in their lives.
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