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.


Anny

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.



Friday, January 6, 2017

Wake Up Adoption Community and Start Asking How Block Granting Medicaid Would Affect our Adoptive Familes

When we adopted our children with Special needs from the foster care system. They came with a promise of Medicaid to defray the catastrophic costs of children with special needs, mental health challenges. It has been in important life-line to help our children.

Our children were lucky to be able to be put on our private health care insurance. Before the ACA we had mental health caps of $10,000 per year for my adopted children. I paid privately for most of their care as both insurance and Medicaid would not cover it.  But without the ACA will we go back to the days of limited coverage, lifetime limits and I know of parents whose kids maxed out their health insurance policies for their medically complex special needs kiddos leaving no coverage for their parents and siblings when they maxed out the $1,000,000 lifetime cap for the family.  Many workers back then told families to not put them on their private insurance.  Things were complex.

But with the Repeal of the ACA many questions are being asked? Will they still get coverage after 18 and even more troubling, for those who have adult disabled adopted children they are in jeopardy of being able to stay on their parents plans. What will happen to my children with preexisting conditions if I have to switch jobs? Will they be uninsurable?

We are hearing much about talk about Block Granting Medicaid. Will we lose our entitlement for their health, mental health and dental care if they give the block of money to the states and they change the rules?

What will that mean for the hundreds of thousands of families who took on children from the foster care system with an entitlement to Medicaid and its protections?  What will it mean for the thousands of children currently in the foster care system who are awaiting homes?  According to NACAC over 50,000 children found homes each year and with of Federal Supports of Medicaid and Adoption Assistance helping defray the complex costs of parenting these at risk and vulnerable children.

We were made a promise of Medicaid to help pay for the many therapies, services and equipment that this vulnerable population needs.  Would the states could be allowed to no longer have to provide EPDST (Early Periodic Screening, Diagnostic, and Treatment) under which children enrolled in Medicaid receive both regular check-up and coverage for all medically necessary treatments necessary that they check-up finds no longer be provided and the ability to appeal denied services?

The Federal Government moved these kids into families and now they want to change our safety net?  They made us a promise and they need to think about how it may affect the promises they made to tens of thousands of families who adopted some of America's neediest children.

When is the adoption and foster care communities going to wake up to the fact that our safety net is in jeopardy?  For the families with private adoptions or overseas adoption what will it mean for special needs waivers as they are optional?  What will it mean as they give the states only so much money to service the Medicaid Population will the entitlement that was promised us until we raised these children be honored?

We need to wake up that they are proposing to Block Grant Medicaid and that will give the states authority to decide what services, what money, what they provide this vulnerable population.

What will it mean for Mackie?  He has FAS and they say it will cost over $2 million dollars in his lifetime for care and services.  Will he get his wheelchair next time which they already denied even under the current system?  Will he be able to get his braces or his therapy services? Will they cover his elemental formula at over $75 a day?


 What will it mean for his future?

How many adoptive children who need specialized mental health services due to their traumatic and abusive histories will struggle with getting the mental health and services they need from Medicaid? Will the important waivers still be there?  My Mackie's health  insurance has saved the taxpayers over $60,000 to $80,000 annually in covered services and while our promised Medicaid back up denied most things and to get his formula covered I had to file and appeal for an administrative hearing.
With a block grant, we could lose the right to appeal!

The tragedy of Custody Relinquishment to get mental health services which already had been a problem of the past, is it due to repeated? Insurances still have limits on hospitalizations and ours are only 30 days. Children with severe mental health needs are still not adequately served by insurance companies in many states.  Often times the child after an out of home placement of 30 days can be covered under Medicaid as a family of one, and parents income does not count.  If block grants come in all bets are off as states can make their own rules and cover who they want.  Will our adoptive kids with PTSD, mental health and prenatal exposure challenges have to find themselves in the justice system to get needed help as they begin to RATION federal Medicaid dollars?

We need to speak up and reach out to our legislators and ask these hard questions!

Wake up Adoption Community and learn about what Block Granting Medicaid may mean for the safety net services and make sure they consider our kids needs during their discussions.

Anny