Monday, March 20, 2017

Special Needs Adoption and What Will It Mean for Our Kids.

When we adopted our children from the foster care system, we were promised Medicaid to piggy back with our insurance to help defray the costs often not covered by insurance.  For many special needs adoptions there are federal supports to help us help the children without bankrupting families.

It has been a life-line for many special needs adoptive families to be able to get the necessary supports that insurance does not provide and to fill in the gaps.

Children's mental health and therapies are often not covered well by insurance. If you are lucky enough to live in a state where mental health parity has forced insurance company's to pay better.  But the out of pocket expenses and deductibles can be expensive.  

For children with developmental and physical issues, insurance often denies many of the therapies, equipment, specialized formulas and other things these complex kids need and having Medicaid is a must for special needs adoptive families.

With all the talk of block granting Medicaid and letting the states decide and ration the care along with per person caps and possible loss of any protections for these vulnerable children.

I wonder what the future will hold for those who were promised Medicaid and appeals rights for our kids.

Right now, we struggle to get many of Mac's equipment funded under Medicaid already here in Wisconsin, what will happen when the budgets become even more stressed.

Mac's wheelchair was denied by Medicaid. We finally got approval late last year from insurance and we had already met his maximum out of pocket insurance criteria of $6, 500 per year.  Fortunately our insurance company saw the need and funded it despite Medicaid saying it was not medically necessary.

Mac's potty seat that has allowed him to use a toilet denied by insurance and Medicaid.  Mac's bath seat, denied by insurance and Medicaid. Mac's formula denied for years as a foster child and once adopted, and with help from high up was I finally able to get it funded. His Physical therapy denied.  He did not need it, despite his involuntary movement disorders and being unsafe to navigate in the greater community.  Has anyone seen Mac walk lately?  Needed genetic testing denied by insurance and Medicaid does not cover it.  I am currently waiting quotes for how much this will run us. I am told it will run anywhere from $2,000 to $5,000 out of pocket or more.

Now we need a wheelchair lift and modifications, not coverable under Medicaid, but coverable under waivers.   But our local county system says he is not eligible for any waivers.  We need a ramp to get Mac's chair out of the house and for it to go to the bus.  But not coverable under Medicaid and only through waivers which the county says he is not eligible for.  There is another $18,000 to $25,000 or more.

Medications, equipment, therapies, genetic testing that are ordered by physicians become a responsibility to the parent to provide.  Parents can be put in a vulnerable position if they don't get them when both insurance and medicaid deny.  Parents pay because they have to get it, or go without and risk the ramifications.  Only parents get charged with medical neglect, if something happened because we didn't have the right equipment, therapy of medication.  But not the Medicaid or insurances.  We have appeal rights, but are those going to go away too as they were apart of the ACA or Medicaid entitlement?

He is already eligible for Medicaid and they told me I must pay for him to be covered under a waiver even though he came from the State of Wisconsin.  I found rules that he is category A, and we shouldn't have to.  But the county told me he is not eligible for any waivers due to his disability and they haven't screened him again and this is all in the current system.  

Things are going to get more complex for special needs families.  Wait lists already exist and they will get even longer. What will it mean for those with children who are Federally entitled because of their Special Needs Adoption and our promised supports of Medicaid and Adoption Subsidies?

Our president and republican congress do not like entitlements, so what will it mean for those who have taken in some of our nations most vulnerable children?  We were promised an entitlement. 

With insurance companies already are known to exclude many things medically fragile, developmentally delayed children, we face many uncertainties.

There are many questions that I have about how the repeal of the ACA will affect my special needs children.  Will our maximum out of pocket protections go away with the repeal of the ACA?  Right now our maximum out of pocket for the family is $13,500 per year.  Will my adopted special needs children and adults be eligible to remain on our insurance or they charge more for his complex needs. 

I am a strong component of special needs adoptions, but until we know what they are going to do with the care and supports for our special needs children under Medicaid and the changes to insurance and how the block grants are affected come down, I would thinking twice about signing on the dotted line to adopt.

I am hearing no talk about how special needs adoptions and how the child welfare entitlements and grants are being affected.  But so many of the other block grants, and other programs are on the chopping block, one can only wonder.  

Many families cannot afford to adopt these children without Medicaid and waivers to get these children like Mac's complex needs covered.  We have a high paying job, and we find ways to pay when our promised supports have failed.  But even our family is struggling to figure out how to now fund the cost of the wheelchair van modification, the wheelchair ramp and the house modifications to accommodate Mac's needs and genetic testing.   We just spent $40,000 on a new van we knew we had to cover ourselves. I pay for respite, hire cleaning help because I have to watch him so very closely.   The costs just keep mounting.  But someday we need to save to retire.

The schools get Medicaid funding for helping under Medicaid and will those be affected?  How about special needs funding and rules under IDEA be affected in the upcoming legislation?

I am not very hopeful that our government cares about our most vulnerable children.  Those who used to be foster children who found families and were promised support to help them in the future.  I would love to be wrong.  But it is a complex system and I doubt those in government understand the complexity of special needs adoptions, child welfare, special needs education, and insurance with catastrophic needs. Few understand just how expensive and complex children from who have faced trauma, abuse, neglect or live with prenatal brain damage and genetic conditions can be.  The powers that be need to think about how block granting Medicaid, repealing the ACA,  and will mesh with the promised safety net for this very special population.


Postscript:  The state just reduced the amount of ABA therapy that was requested.  Our insurance will fund the major amount and all that would actually go through the state would be the deductible and copays so they actually save money on Mac.  But kids on Medicaid in Wisconsin are being offered less than kids on insurance that is listed on the State of Wisconsin Insurance Mandate.