[Adoption_Ally]

My 10 YO IA daughter has a very rare genetic disorder - Pallister-Hall Syndrome. She suffered extreme neglect for the first two years of her life, and was diagnosed as FTT. Maya has had multiple major surgeries, with more to come.

Until now we've been able to take care of all her medical and developmental issues through private health insurance. However, like many of us these days, we can no longer do so.

It's been a heart-wrenching few weeks coming to the decision that we need for her to have the diagnosis of 'disabled'. Even though we knew she faced so many challenges, we've been afraid that labeling her as disabled would somehow limit her. Intellectually I know that isn't true, but in my heart I feel guilty and somehow disloyal.

Anyway, I've already signed her up for Medicaid. Now I need to get Social Security Disability for her and get her qualified for a state program that takes care of all of a child's medical and developmental needs regardless of family income.

I'm concerned about the process because her diagnosis is extremely rare (maybe 250 people in the world) and complex. Very few doctors have even heard of it. Because of the rarity of her diagnosis combined with all the FTT and adoption stuff, I'm the primary coordinator of all her health care and services. She has a PCP, but he trusts me and pretty much does whatever I ask him to do. Ah, the joys of managed care.

Any advice or suggestions as to how to be successful at getting through the system would be really appreciated.

[Barksum]

You might try posting on the Special Needs adoption board. Even though they mostly deal with emotional special needs on that forum thre are several parents who have childrein with high medical needs, and who are constantly working within the system to advocate for care, etc.

[Adoption_Ally]

I'll try that. Thanks!