My Family

My Family
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Friday, August 17, 2012

Medicaid from Inside the System

Our first job after college as "houseparents" in a group home convinced us that we wanted to adopt a special needs child.  The emotional stability the adults who had spent most of their time with their families possessed compared to the adults who had grown up in the institution was very obvious.  Thankfully we live in a state where we do not place children or adults in institutions and haven't since the 90's.  This is not the case nation wide and one of the many reasons I love Minnesota.

Much of this deinstitutionalization was accomplished due to Medicaid waivers for the disabled which is in grave danger of huge cuts as well as the end to the current right to coverage, i.e. entitlement, due to disability depending, in part, on the outcome of the next election.  In 1998 nearly 44% of those on Medicaid were the disabled and blind. 
The $800 billion in cuts, that has been proposed by one candidate, is a frightening prospective for parents like us.

 Our family is incredibly fortunate to have an amazing support system in place, which is not the case for the many parents who are raising disabled children.   Our support system is in place, partly,  due to the financial support we have at our disposal.  If that is taken away, it's likely we'd lose many of our support people as they have families of their own to support and would be unable to "volunteer"  their time.

Two of our children are on Medicaid waivers and three others receive significant financial assistance via state grants and medical assistance.  Being pro-life is an expensive long term stance, not a one time expense.  Special needs kids require tax money, lots of tax money, to raise, educate, "therapize" and in general, keep alive.  Shannon's specialized liquid nutrition costs more than $1500 per month - there is no way we could pay for that ourselves.  We rely on medical assistance to cover that cost as well as the many other expensive medical supplies that she needs.

Medicaid waivers were used to provide community based services for DD (developmentally delayed) children and adults.  This is how deinstitutionalization was made possible.  Most of the DD population requires a variety of support to stay in a community setting and many of the people who transitioned out of institutions were and are wards of the state.  I know at least two of our adult children's biological parents were told to put their children away and try again if they wanted a "normal" child.

Now, at least in Minnesota, parents are expected to raise and care for their own children no matter what their needs are.  Don't misunderstand, I obviously strongly believe that this is how it should be, but there are many many children surviving today that never would have survived 15 or 20 years ago and not without significant costs both financially and emotionally to parents.  Many people are ill-equipped to handle the stress and financial cost of parenting children with profound needs. We chose our children and yet people often remark, "I don't know how you do it?"  Parents who did not make that choice are just expected to deal with it.

                                                Shannon post back surgery in July 2010.

                                                Robby, our foster son, at his group home.

My concern is that there are many who seem comfortable with gutting a program that is in place to keep the most vulnerable citizens among us alive and well cared for.  If these are not "the least of these"  that Jesus told us to care for, I frankly don't know who is.  

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