Friday, January 6, 2012

Go Go Go

Tonight I am sitting here trying to figure out how to title this post.  Ethan is laying on the bed next to me running his cars up and down Chris's legs and yelling Go Go Go.  The girls are down the hall waiting to find out who is going to be the Family Wizard and Jake is hanging with a friend. 

My heart is heavy and my contacts are all fuzzy from all the crying that I did today.  Gracie and I along with many other families, adults and children with Intellectual Disabilities/Developmental Delays sat in on the The House Appropriations Committee and Senate Finance Committee public hearings to tell them our stories of why we must End The Wait for ID/DD Medicaid Waivers in the State of VA. I was so proud of Gracie, she stood up in front of those "old men" as she called them along with two other siblings to show her support for her brother while a teenage boy told the story of his twin sister...how he worries about her and what her life will become without the state's help. 

Governor McDonnell's budget has no commitment to fund new waiver spots until July 1, 2014.  Right now 7,000 individuals with Intellectual Disability or Developmental Disability are on a waiting list just to get a waiver of those 7,000, Sweet Ethan is just 1.  3,000 of those on the waiting list are considered urgent - some examples of urgent need include living with an aging or ill caregiver, risk of homelessness and risk of abuse, neglect and exploitation.

Mothers, Fathers, Sisters, Brothers, Teachers all got up for 3 minutes each and told their story.  They told of their child being on a list for 15 or more years, they worried about how they would take care of their child once they are gone.  What will happen to them?  Institutions...well, plenty of stories were told about those institutions ...patients being beaten, staved and neglected.  Can you imagine raising your child and knowing that as you age and are no longer able to care for your adult child with a disability this is what would happen to your child? I can tell you that the answer for me is NO!

Ethan is 3 and I will start fighting now to make sure he is taken care of when I can't take care of him any longer...so as Ethan says "GO GO GO"  That is what I will do...

To learn more about our fight go here Virginia Budget Hearings.

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