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Our SMA Resources

March 13, 2009 by Bill Strong
It's no secret that one of our biggest frustrations since Gwendolyn's diagnosis has been navigating the muddy resource waters. What do we need? What do we qualify for? What do others use? How do we go about getting help? In our experience, the resources - government, national, and local - exist, and they exist in abundance. But, there is no single process or catalog or community or database, online or offline, that brings all of these options together in a simple, useful manner.

So, we thought it would be a good idea to do a post listing all of Gwendolyn's resources in the hopes that it may help another SMA family now or in the future. This is a continually growing list because even though it has been nearly a year since Gwendolyn's diagnosis, we are still learning about programs that we qualify for that we are only just discovering (sigh!).

Gwendolyn's Resources

Medi-Cal (California's Medicaid program) - We're still new to Medi-Cal and are unsure what doors this will or will not open for Gwendolyn. The jury is still out, but it is clear that it isn't going to be straightforward, proactive, or seamless. Although generally Medi-Cal is a medical assistance program based on income and assets, there is a waiver program, Department of Developmental Services Waiver Program (we've also heard it referred to as the model waivers program), for diseases such as SMA that do not take into account the income and assets of the family for eligibility and instead look at the medical severity. See our blog post about Gwendolyn's Medi-Cal approval process here for more information.

Tri-Counties Regional Center - We receive psychotherapy, assistance with night nursing support (see NurseCore), occupational therapy, play therapy, music classes, and adaptive learning/development services from Tri-Counties Regional Center, a State of California funded program. Click here for a directory of California Regional Centers.

California Children's Services (CCS) - Gwendolyn receives physical and occupational therapy from CCS, a State of California funded program for children with certain diseases and health issues. They also provide select durable medical equipment (such as a ramp) and coordinate any orthopedic equipment, but we are just beginning this aspect.

NurseCore - NurseCore is the contractor that provides us with our night nurses (RN/LVN trained nurses with pediatric experience). We've found that pediatric experience can be difficult to come by and so Tri-Counties Regional Center found NurseCore to suit our situation.

Visiting Nurse & Hospice Care of Santa Barbara (VNHCSB) - We receive an endless list of important services and support from our amazing hospice program. Dedicated RN, spiritual counselor, and social worker, select durable medical equipment and all of Gwendolyn's food and day-to-day medical supplies, pharmacy delivery, occupational and physical therapy; all in our home -- all coordinated for us by VNHCSB. Click here for a blog post we did on our experience with our hospice.

Hospice of Santa Barbara - Victoria and I receive support and services from this unique resource including massage therapy, dedicated volunteer services, and access to a social worker.

LifeCare Solutions - We receive all of Gwendolyn's food, durable medical equipment (bi-pap, cough assist machine, nebulizer, suction machine, feeding machine, oxygen, pulsox machine), and day-to-day medical supplies from LifeCare Solutions, coordinated by VNHCSB.

David Abbott, MD - Gwendolyn's amazing Santa Barbara, CA pediatrician.

Ching Wang, MD, PhD - Gwendolyn's Stanford pediatric neurologist.

Nanci Yuan, MD - Gwendolyn's Stanford pediatric pulmonologist. We call Dr. Yuan the "mountain mover" and trust me, the nickname is appropriate. She's exceptional!

William Berquist, MD - Gwendolyn's Stanford pediatric gastroenterologist and nutritionist.

Santa Barbara Cottage Hospital - Our local hospital.

Lucile Packard Children's Hospital (Stanford) - Our SMA specialty hospital.

Health Net - It's no secret...we've had a well blogged about and documented love/hate relationship with our health insurance provider. All-in-all, they've been pretty good through all of this...knock on wood, they haven't dropped us.

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