♥ ♥ Parenting with MS with Taunia Bowman ♥ ♥

Parenting these days is hard enough but when you get Multiple Sclerosis thrown in the mix, it’s that more challenging. I’m not going to ask you to discuss your problems because problems are sometime hurdles to high to overcome. I want you to be able to discuss you parenting challenges because those have solutions; sometimes it just takes someone impartial to help come to those solutions.

One thing I want to do is help you teach your kids about your MS. There are a lot of resources out there its just many people don’t know how to access them.

Friday, March 11, 2011

Public Policy Conference 2011

 OK, I love advocacy work and the National MS Society so when I can combine the two…all the better. This year I once again attended the Public Policy Conference in Washington, DC. It started from home Monday, March 7 at 6 am waking up my 9 year old for school. After dropping him off late, we had a hard time getting him moving, we hit the highway.  We got to the hotel, Hilton Mark in Alexandria by 5:30; got all checked in and while I missed the health care update and the CDMRP (Congressionally Directed Medical Research Project) briefing but that’s ok because we advocated last year for the CDMRP the only change was we were asking for more money. I barely made the welcome reception but I was tired.

After getting to sleep at 2 am, I had a 6 am wake up call to be at a breakfast for Government Relations Committee Chairs. Yes I do it all, state advocate, federal advocate, local walk manager, support group coordinator but I digress. Anyway, at the GRC breakfast we discussed health care issues and split into regions to discuss what we are doing in our chapters. After that were the briefings on the other two issues.

One of the issues we took to the hill was introduced in the house and senate Monday, March 7. It is HB 883/S495 The Adult Achievement Center Enhancement Act. It allows for funds to survey for Adult Achievement centers. Most of the current adult centers cater to an older population (65+) with Alzheimer’s, Parkinson’s, etc. and MS is showing to be a younger persons (ages 20-50) disease. These achievement centers would have physical therapists, occupational therapy, speech therapy, RN’s, social workers, nutritionists, etc. a whole team of people to treat the whole person. They also cover maintenance not only on the person but on their equipment such as wheelchairs. Insurances don’t cover these usually. There are successful centers in Seattle, Minnesota, New York and one other one. There would be government grants that could be applied for either by for profit (such as hospitals) or non profit agencies to start these $28 million over 5 years, $1, $3, $6, $8 and $10 million.

The other thing was to find someone in the house to back a bill for Access to Neurological Care. We request that Congress support legislation that would allow neurologists to qualify for Medicare payment incentives, in order to improve access to these providers for people living with multiple sclerosis (MS). This legislation will correct an omission in the Patient Protection and Affordable Care Act (H.R. 3590), which led to the exclusion of neurology from the list of specialties eligible to receive the Medicare payment incentives. A bill to change this provision will be introduced by Sen. Amy Klobuchar (D-MN) and cosponsored by Sen. Susan Collins (R-ME).

MS is an unpredictable, often disabling disease of the central nervous system, which
interrupts the flow of information both within the brain, and between the brain and
body. Symptoms range from numbness and tingling to blindness and paralysis.
Due to the complex and unpredictable nature of the disease, many people with MS
depend on neurologists to coordinate their care and and act as their primary care
physicians throughout their life. In order to ensure that individuals have appropriate access to primary care physicians, the Patient Protection and Affordable Care Act included a specific provision to attract more physicians to primary care specialties as increased demand
is expected. Specifically, the Patient Protection and Affordable Care Act provides a
bonus to physicians who: (i) specialize in family medicine, internal medicine, geriatric
medicine; pediatric medicine and (ii) have allowed charges for evaluation and
management services that account for at least 60 percent of the physician’s or
practitioner’s total allowed charges. Most neurology practices are heavily focused on patient evaluation, management and coordination of care for those living with neurological conditions, like MS.

Well, Wednesday was the long day on the hill but for us and many that we talked to during the day, it was a successful day. I also spoke as a mother on the cancellation of our local high school NJROTC program and invited our congress people and senators to attend a local rally, as well as our May 1 walk MS. I urge everyone to call or write your congress people and senators about the above bills and urge them to join the MS Caucus if they have not already done so.

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