Tuesday, May 12, 2009

I am still in the editing process, but...


I am composing a letter to send to our wonderful legislators about the proposed budget cuts for early intervention (basically physical therapy, occupational therapy, etc...).  They initially tried to take away all services our special little kiddos receive, but that will illegal and didn't fly.  Now, in addition to major budget cuts, they are saying they may have parents pay a percentage of it.  I know it doesn't seem like much, but when you already pay for private insurance and the millions of other little things that go along with having a child with special needs, it adds up very quickly!  For us, we pay $450 a month for insurance.  Our deductible is $2,500 a year and our co-pay is $35.00.  Madi receives physical therapy and has a developmental specialist for an hour a week.  She also will be starting occupational therapy.  Currently, the Department of Developmental Disabilities pays for the amount not covered until our deductible is met and our co-pay.  I know we are lucky to have the support, but couldn't give Madi what she needs without it.  We would be paying the $450 a month for insurance and $105 a week for her services, and that's after we met the $2,500 deductible.  In the near future, when Madi needs walkers, wheelchairs, etc..., we will also be paying for that.  Then, if she ever needs to be cathed, there are those supplies, the co-pays on her medicines, adaptive things she will need for our home, gas to and from appointments, and many more expenses.  Although she is worth EVERY penny, those pennies add up quickly!  The legislators are saying they are not hearing from parents who are unhappy about the changes.  I think they forget that our time is limited!  So, pardon my long story and my spelling errors, but here is a draft of the letter I am writing.  I will be sending it to everyone I can.  I hope it inspires others out there to write a letter too.  Let your voice be heard!




Dear ,

 

I am writing to you concerning the proposed budget cuts for early intervention programs in Arizona.  I am a mother of two and my youngest, Madilynn, has spina bifida, hydrocephalus, and a Chiari II malformation.  She is currently five months old and receives physical therapy, services from a developmental specialist, and is being evaluated for occupational therapy.  Although we pay for private insurance, we also utilize The Department of Developmental Disabilities (DDD) and The Children’s Rehabilitative Services (CRS). These services are absolutely crucial to her physical, mental, and long-term wellbeing.

 

I am an educated individual with a Master’s Degree in Elementary Education, a reading endorsement, and an SEI endorsement.  I have even taken a few special education courses at the college level and still do not have enough knowledge of how to most effectively work with Madilynn and help her live up to her full potential.  It honestly takes the efforts of trained, knowledgeable, and caring individuals, such as the ones that work with Madi, to give her the assistance she needs.  The specialists have given me ways to work with her and it is because of them that Madi is doing as well as she is.  We have seen her make tremendous strides in just the few months she has had assistance.  Unfortunately, though, when Madi meets her current goals, I will once again be at a loss of how to help her.  Both Madilynn and I need the help and support of her therapists on a regular basis. 

 

As you and I both know, money is short and changes must be made.  I am thankful that federal stimulus money is available, but know that more needs to be done.  I am asking that you will seriously consider taking money from other places so that our children can still strive and receive the help they so desperately need.  For example, instead of paying for elective epidurals for women receiving ACHHS, you can pay for something that, in my opinion, is absolutely not elective-- our children’s futures.  If Madilynn does not receive the help she needs now, her chances of walking are very slim,.  The cost in the long run will be much greater not only for us, but also for the State.  Madi is at her most critical point of development, and needs immediate, ongoing assistance.  I have attached a copy of the appeal I sent to DDD and ask that you read that for more information about that long-term costs that will arise if early intervention budgets are cut.  You can also read more about Madilynn and the amazing little gift she is by visiting www.missmadisjourney.blogspot.com.  When you make decisions regarding budget cuts, please remember my daughter and the disservice you will be doing to her, and others like her, by taking away even 10% of the budget.  Our children need you.

 

Sincerely,

 

 

 

Jamie Veprek


3 comments:

  1. I wonder if some of the numbers you gave above might be good to work into your letter. Politicians like numbers :)

    ReplyDelete
  2. Wonderfully written. I hope other parents will do the same and your legislators will take heed!

    ReplyDelete
  3. That's a well-written letter, Jamie! I love this blog, and can hardly believe how much Madi has grown!

    ReplyDelete