Friday, December 05, 2008

Good News... Bad News...

GOOD NEWS: I snagged some more pictures and video of Miss Em over the past couple of days.
BAD NEWS: They aren't included in this post.

GOOD NEWS: Emily had her botox follow-up appointment at Children's Hospital on Tuesday afternoon and (despite getting shots the last time she was there) she happily walked into the building, the waiting room and the exam rooms!
BAD NEWS: The doctor did a couple of flexy-things with Em's feet and quickly pronounced that Emily's flexibility hasn't changed one iota.

Say what?

The following day was physical therapy day and I mentioned the above to the physical therapist. Thankfully, she had the same reaction that I did. She didn't agree at all. She says there are so many things that Emily is doing now that she simply couldn't do before. She is also walking with her feet down when we remind her and she couldn't do that before.

We did get another prescription from Dr. B at Children's (whom Emily is now referring to as Nana B). They are recommending that Emily start going to PT twice a week now. So let's add those up... 2 physical therapies each week, 1 speech therapy each week, botox injections every 3 months, botox follow-ups 3 weeks after each injection, regular pediatric appointments and shots and a partridge in a pear tree!

GOOD NEWS: We found out Wednesday evening that Emily was approved for BCMH treatment funding. We don't have all the details yet, but should be getting them on Monday in the mail. She was approved a couple of months ago for BCMH Early Intervention funding, but if I understand it all correctly, that runs out when she turn 3 in May (can you believe she'll be 3 already!) and it has some different stipulations to it.
BAD NEWS: Apparently BCMH funding is getting hacked at like everything else in the Ohio Governor's budget and the last time it happened thousands of families' funding was cut with very little notice. The state is also looking at moving BCMH to be covered under some sort of Medicaid umbrella and that causes all sorts of other problems for BCMH families. At this point, I don't have a clue how this will effect us. If this happens, I don't know if we'll lose all funding, some funding or if everything will change altogether for us. I'm holding on to what I have right now and praying that Emily won't be harmed by the beaurocratic number crunching and shuffling that is said to be happening in the wings.

That's it from me, but if you care at all about special needs families in Ohio, the letter pasted below is definitely worth a read. We CAN do something to try to prevent this from happening. Take up your pens... or word processors and start writing!

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What is Happening to BCMH???

I am a concerned parent who has two children with Special Health Care Needs receiving benefits under the Ohio Department of Health’s Bureau for Children with Medical Handicaps program. I am a member of the Parent Advisory Council (PAC) for the Bureau for Children with Medical Handicaps. I am also a working, tax paying, citizen of Ohio. My daughters are covered under private health insurance and rely heavily upon BCMH to be their safety net.

In 1969, the Ohio Bureau of Crippled Children’s Program (BCCS), now BCMH, was moved to Ohio Department of Public Welfare from the Ohio Department of Health. Because of disastrous results, it was moved back to the ODH in 1974. Medicaid did not understand the BCMH program. The end result was that BCMH clients were lost in the public welfare system and many working families did not qualify for services.

In 2006, the state again considered moving BCMH from ODH to the then proposed Department of Medicaid. At that time stakeholders of BCMH warned that such a move would put the uniqueness of BCMH in jeopardy. The stakeholders were concerned that BCMH would be seen as and become a Medicaid-type program thus risking its ability to provide services to working, middle class, privately insured families with Children with Special Healthcare Needs as well as to those Children with Special Health Care Needs who are covered by both Medicaid and BCMH. In response to the stakeholders’ concerns, BCMH remained an important part of ODH’s mission.

BCMH is again under threat of removal from the purview of ODH to under the scrutiny, management, and operation of EMMA (Executive Medicaid Management Administration). This move clearly goes against legislative intent in maintaining the uniqueness of the BCMH program and against the recommendations of the BCMH Legislative Task Force to Study the Future Funding of BCMH. It also clearly has been demonstrated that such a move will prove ineffective in providing services to Ohioans who rely on the program for health care.

What is at Stake?
What happens if BCMH is moved under the executive management and administration of EMMA and becomes a Medicaid-like program?

  1. This move puts the uniqueness of BCMH and its ability to be a safety net for families of Children with Special Health Care Needs in jeopardy. BCMH has the potential to become Medicaid-like and be lumped into Medicaid with the same limits to benefits.
  2. Many children of working families who have special health care needs neither financially nor medically qualify for Medicaid. Applying Medicaid eligibility requirements will result in the loss of services to people who rely on BCMH for their health care.
  3. The population that is currently served by BCMH is not the same population as those currently being served by Medicaid and some of those being served by BCMH will fall though the cracks and lose their services.
  4. Medicaid maintains a limit on the number of prescriptions per month and tends to be too restrictive for people of certain disease groups covered under the BCMH program. Relocating BCMH under EMMA could result in patients being unable to get the prescriptions that they need to stay healthy each month. BCMH Medicaid dual eligible clients are currently permitted and encouraged by BCMH to opt out of Medicaid managed care plans because they are too restrictive and present barriers to clients obtaining appropriate and accessible health care and necessary medications.
  5. The state of Ohio has more control over BCMH and the benefits offered to its clients than it would under Medicaid.
  6. The staff of BCMH works directly with families who have Children with Special Healthcare Needs to make difficult situations work and to find solutions to unique problems while Medicaid does not.
  7. Benefits unique to BCMH will be lost as BCMH is forced to become Medicaid-like.
a) The PIPP program (Private Insurance Premium Assistance Program) is unique to BCMH in that it helps to pay premiums so that clients on the program are able to retain their private health insurance creating a cost savings for the BCMH program and the state of Ohio.

b) The Medicaid spend down program for disabled dual eligible BCMH/Medicaid clients allows BCMH to pay the Medicaid spend down amounts to ensure that they will receive both Medicaid and BCMH benefits which presents a cost savings to the BCMH program and the state of Ohio.

c) BCMH is able to draw down Federal Maternal Child Health Block Grant dollars and individual county real estate tax dollars within the Ohio Department of Health. Medicaid cannot access these dollars.

d) BCMH allows Children with Special Health Care Needs to be covered under the program until age 21 while Medicaid stops at age 18. Clients with CF are covered into adulthood.

e) BCMH allows for the HIPP program (Hemophilia Insurance Premium Program) while Medicaid does not.

f) BCMH works in conjunction with the Help Me Grow Program while Medicaid does not.

g) BCMH has a diagnostic component while Medicaid does not.

h) BCMH supports families allowing them to continue to work and pay taxes while Medicaid does not.

BCMH Budget

In addition to a proposed move, BCMH has also seen cuts to its current budget with more cuts likely to be proposed in the near future. In recent months, ODH/BCMH has experienced a budget reduction by action of Governor Strickland in the following ways…BCMH Children’s line item has been lowered by $512,610 (4.75% cut); the Adult Cystic Fibrosis line item has also been cut by $94,044 (almost 6% cut).

Historically, ODH/BCMH has handled budget reductions by manipulating the financial eligibility formulas resulting in the elimination of clients covered under the program. The last time cuts were incurred; five thousand clients were removed from the program with little to no notification of BCMH clients. Some benefits in the service package were also cut affecting thousands of clients.

What Can I Do to Help?
In the coming weeks, we will be organizing a campaign to address the issue of budget cuts and the movement of BCMH directly with the Governor’s office and the state General Assembly. We need your help to ensure that BCMH continues to provide services to Ohioans.

I would strongly advocate that BCMH remain under the leadership and direction of ODH so that it may retain its uniqueness and continue serving the needs of Children with Special Health Care Needs of Ohio.

Please distribute widely.


Mr. David L. Hoffman, Parent of two children on BCMH
Member of the Parent Advisory Council (PAC) for BCMH
PH: 740.548.7305

For more information, or for more information about the upcoming action steps, please contact:

Mrs. Kim Mathews
Member of the Parent Advisory Council (PAC) for BCMH
PH: 740.366.2858

Mr. Jason Ranville
Public Policy Specialist
Cystic Fibrosis Foundation

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