Do you feel like a child with Dandy Walker in CA and NY has the same access to treatment and coverage?  I’m speaking in the insured world but I’d love everyone’s perspective on both insured and uninsured to help to educate us all and develop a guide.
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Dandy-Walker Alliance, Inc.
10325 Kensington Pkwy Suite 384
Kensington, Maryland 20895
1-877-Dandy-Walker (1-877-326-3992)
The Dandy-Walker Alliance, Inc. is a 501(c)(3) tax-exempt public charity registered in the State of Maryland.
Access varies widely from state to state. Although things like early intervention and medicaid are federally funded each state sets their own guidelines as to how those funds are used and what criteria services are based on. Waiver programs are another thing that vary greatly, depending where you live a DW child might automatically qualify and elsewhere a waiver program may not even exist.
Less than half of the states have a high risk insurance program, which allows families to purchase affordable private insurance for individuals who, for medical reasons, don’t otherwise qualify for private insurance.
I think treatment options, even for people with the same type of insurance coverage, vary widely. People living in rural areas often don’t have as much access to newer technology as someone living in a large metropolitan area. An example would be a rapid MRI. With better quality than a CT scan but fast enough not to require sedation for small children. This equipment is not mainstream at the moment therefore families often have to opt to either sedate for better quality or have a CT scan and hope its detailed enough for a Dr. to see what he is looking for. Shortages of therapists in rural communities also limits families treatment options or puts them in a position to have to travel several hours a week to obtain therapy services.
Hi every one My name is Anna Andrade I am 27 Years old and a mother of two, I have DW and I just had a brain surgery done back in februry,a shunt was place in my head because I had a big cyst and I always have bad head aches and the surgery was gona help with the head aches, well it did not happen I still have head aches and nothin I do help relieve the pain, I can not remember many things and most of the times I feel irritable and I am having hard time concentrating,I do Know if any body knows about any treatment outhere that works i would really love to know.