Lost in the system
Lawmakers, physicians work to resurrect program for medically fragile children
By Jill Coley
When the Medically Fragile Children's Program closed at the end of March, families began navigating a vastly different system of care.
All the services housed under one roof became disparate. Special needs children, sensitive to change, started working with new therapists and doctors.
The Post and Courier
Speech therapist Priscilla Terzo helps Alex Smith, 4, work on his swallowing skills as he eats chocolate pudding while his mother, Melissa, entertains his brother Mathew, 2. Alex took part in the Medical University of South Carolina's Medically Fragile Children's Program that was shut down in March.
The Medical University of South Carolina program in North Charleston served young patients with a one-stop shop for numerous services, such as primary care, social work and occupational and speech therapies.
The children are among the most vulnerable, suffering from multiple and complex physical and mental disabilities. Half of the children are foster and adopted children whose parents stretched their lives to care for them.
As families launched new routines, local, state and federal authorities launched a legislative assault to bring the program back.
Charleston Mayor Joe Riley has championed the cause.
"Those who have adopted and fostered these children are angelic," he said. "We must change whatever regulation you need to make it work."
The program, which had three sites in the state and gained national attention for its success, folded after federal Medicaid officials recognized that the state "demonstration project," a sort of pilot project, bundled services for billing in a way that never was authorized.
U.S. Rep. Tammy Baldwin of Wisconsin introduced legislation in late February to establish the all-inclusive program as an option under Medicaid. Reps. Henry Brown and John Spratt of South Carolina are co-sponsoring the bill, along with two more representatives from New York and Illinois.
Previous story
Medically fragile kids losing team, published 02/22/09
On the state level, Senate leader Glenn McConnell introduced a joint resolution April 1 requiring the S.C. Department of Health and Human Services to maintain the program pending the passage of the federal regulation.
"These are special needs kids, and they knew the environment and felt safe," said former program director Pat Votava. "They're having a hard time adjusting."
To replace the medically fragile program, DHHS created the Medically Complex Children's Program, a waiver program that covers services organized by a nurse coordinator.
Fifteen practices from across the state have agreed to participate in addition to staff at the Easley and Columbia sites, where the other medically fragile programs were located. About 90 children are enrolled so far, said Jeff Stensland, spokesman for the DHHS, the state agency responsible for Medicaid.
"At MUSC, we chose not to participate from a physician standpoint in the waiver because financially it would not have been prudent," said John Sanders, administrator of the MUSC's Children's Hospital, which operated the local program.
Physicians would have been responsible for providing the care and case management, which would have required more personnel, Sanders said.
Out of the 25 patients at the North Charleston site, only 8 qualified for the waiver, which had stricter criteria, he said.
Melissa Smith, who moved to Charleston a year ago to get her son in the program, said Alex qualified for the waiver. But she opted for traditional fee-for-service Medicaid instead so Alex could continue to work with therapists he knew.
Alex, 4, underwent 14 surgeries to correct complications of Pierre Robin syndrome, which affects the mouth and jaw. He gets his food through a tube to his stomach.
"The convenience was nice, but it's not the point," Smith said. Alex's speech therapy and occupational therapy were roughly halved, she said.
"The focus is off what's best for the children to what can we get Medicaid to pay for."
Reach Jill Coley at 937- 5719 or jcoley@postandcourier.com.
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wjhamilton3 (anonymous) says...
Hopefully if we're able to improve that nation's healthcare system this endless patchwork of programs, grants and charitable fund raising will be replaced by a system where parents of medically needy children will be able to obtain care for their children without ending up in bankruptcy. "Pilot programs" get funded all the time with the hope that somehow they'll become self supporting and when they're cancelled, somebody, somewhere else tries to come up with something to meet the same need. Of course very ill children, from families which are financially broken can't pay the bills and private insurance, if they have it, won't.
No other industrialized nation puts families in this situation through this. With programs everywhere being cut, it's going to get worse. Waving a bunch of teabags at it doesn't solve these children's problems.
April 20, 2009 at 8:31 a.m. ( permalink | suggest removal )
jammanofdi (anonymous) says...
Priscilla Terzo - how you doin? Wow - she's alright!
April 20, 2009 at 9:28 a.m. ( permalink | suggest removal )
MissJames (anonymous) says...
As one of the families affected by the closing of the MUSC Medically Fragile Program I can verify it is making a difficult job even tougher.The reason you should care is because many of the children in these programs are foster or adopted children . If the State wants medically fragile children placed in loving homes,either foster or adoptive,they need to help make it work.The 3 Medically Fragile Programs throughout the state proved that they could do that.Adoptions of these special kids skyrocketed.It is so hard to have a child that requires 4-6 therapy appts a week,multiple specialists appts, frequent ER trips ,hospitalizations and a spread sheet to keep track of all the daily medications. We are asking families to voluntarily take this on through foster care and adoption.
Medically Fragile Programs are a win/win for everyone.They contain costs while providing superior medical and social outcomes.I can verify that the program saved the state enormous amounts of money due to the improved medical and developmental status of my son.
The original program began more than 12 years ago.Charleston's program began over 3 years ago.Surely the Federal Gov't knew before last year how the funding was worked.Surely someone at the State level could have worked this out.It saves Taxpayers money!
My son[foster/adopt] did not qualify for the waiver. I would have turned it down anyway,since it is ineffective ,in my opinion.I pray Governor Sanford will move forward to rectify this situation.Thank you to all the lawmakers who will go to bat for the most vulnerable in our society. Thank you Mayor Riley!
April 20, 2009 at 10:34 a.m. ( permalink | suggest removal )
theronce (anonymous) says...
wjh, you go too far yourself sometimes. I know of no teabaggers, as you deride them, who would begrudge one nickel of tax money to provide for these kids who cannot do this for themselves. The kids need help, and all good citizens are willing to help and expect their government to help too. Are you deliberately painting the teabaggers as anarchists, or do you really not understand the difference.
April 20, 2009 at 11:40 a.m. ( permalink | suggest removal )
Luna (anonymous) says...
theronce - I believe that wj's reference is because of a lot of absolutes that have been quoted to the teabag groups.
When people talk in terms of less government the first to suffer are the ones that have no voice; which normally falls to the young, poor and weak.
April 20, 2009 at 11:58 a.m. ( permalink | suggest removal )
Southern_Cousin (anonymous) says...
This is the kind of Medicaid program that should benefit from my additional dollar, recently added to federal cigarette taxes per pack. It makes me happy to give my dollar per pack if it helps these kids and others in similar situations (veterans, orphans, abused & neglected children, etc.)
Unless you have been a family member or worked with the handicapped, you have no idea how much help these kids need. And the therapies are very very expensive. And you have no idea how wonderful these kids are. Each handicapped child has his or her own special blessing to share with their world.
This is one of the best and most proper use of our taxes- to assist the helpless (or in the case of veteran's - those who gave all and sacrificed for us).
And you can serve THAT at your next tea party.
April 20, 2009 at 1:01 p.m. ( permalink | suggest removal )
eyfigueroa (anonymous) says...
Here Here Southern_Cousin!
*raising glass of iced sweet tea*
April 20, 2009 at 1:29 p.m. ( permalink | suggest removal )
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