Our Next Road Block - Finding Help

Once I came to terms with things, I decided it was time to get busy.  It was our job as parents to make sure that Kennedy has everything she needs.  Not just the necessities of life for a baby, but the services that would help her get ahead.  Sadly, we left the NICU with very little direction with where to start.  Luckily, I am the queen of Google and spent what little free time I had, researching.  And researching, and researching.  Really.  How could this information be so hard to come across.  Thanks to my wonderful midwives, I was put in touch with another mom in the area, who has a child with Down Syndrome.  She was a great source of information and friendship.

I started by contacting Childrens Medical Services.  I was told by the Coordinator that because Kennedy is covered under private insurance, that there was nothing they could do for us.  I couldn't believe what I was hearing.  Because Kennedy didn't qualify for Medicaid, she said we were not eligible for any programs.  I inquired about Medicaid as a secondary coverage, since clearly our out of pocket costs would be significant.  There is a waiver that she is eligible for because she has Down Syndrome.  I asked how I needed to go about applying for that.  I was basically told not to bother.  There's a five year waiting list.  Yes...FIVE YEARS!  It took me time to pick my jaw up off the floor.  How is it that we pay so much in taxes, and work so hard, yet we can't get the help we need.  Just as I finally got my jaw back where it should be - the CMS worker suggested that I get divorced...because then Kennedy would be eligible.  Excuse me?  Did I hear that right???  There was no way that 10 months after getting married, I was going to get divorced, just so I could find a way to "get around the system."  I dreamed of this life for too long.  I don't care if it's "just a piece of paper."  It means far more than that to me.  Do people actually do that?  Fortunately, after several phone calls and messages - I was able to schedule Kennedy for an evaluation with Early Steps.  They would provide services, for physical therapy, speech therapy, and occupational therapy at no cost to me - up until she turned three years old.

My next task was to apply for SSI Disability benefits.  This was what everyone told me to do ASAP.  Three minutes into the phone call, I was told we didn't qualify.  Once again, excuse me?  I thought Down Syndrome was a qualifying disability?  Well, I was right.  It is.  But once again, we don't meet the income requirements.  Apparently no one takes expenses into consideration.  Not to mention, in order to qualify we'd have to be making so little money, I have no idea how we would survive.  I don't know how one person could live off what they expect, let alone three.  But, silly me, what was I thinking?  She directed me to the Agency for Persons with Disabilities.  Perfect!  Surely they can point me in the right direction.  I called immediately.  I left a message.  I left four more messages that week.  (That was five weeks ago, and five MORE messages ago.  I have yet to hear from anyone.)

Well, since Kennedy doesn't qualify for any programs because we are covered under a private insurance, surely our insurance company must be able to provide some information or resources.  One phone call, and six transfers later, I was able to finally talk to someone.  A representative from the Nurse Advice Line!!!!  I hung up the phone shaking my head, more frustrated than ever.  I did manage to get assigned a "Case Worker" out of that phone call.  She provided me with the website for the National Down Syndrome Society.  Like I hadn't come across that yet!

Next stop - a Social Worker at the hospital where Kennedy will have her heart surgery.  She researched some options for us, in hopes that we could purchase a supplemental plan, to cover Kennedy's our of pocket medical expenses.  Guess what?  She turned up empty handed.  She also stressed that she didn't think we would qualify for the hospital's reduced payment plan.  But she did tell me not to worry, because my daughter would get the care she needs, and we can "figure the rest out later."  Good, I'm glad they are aware of that.  Thank you!  One battle I don't have to fight.  And they will likely get $25 a month, just like everyone else....for a really long time.