The ARC of Virginia is collecting stories to give the the Judge in the DOJ case against the state of Virginia for its failure to provide funding and "least restrictive environment" housing options for people with special needs.  Please,  if you or someone you know has a medicaid waiver (for people with mental or physical disabilities, autism spectrum disorders and the ELDERLY) write to the Judge at the address listed below to show your support of the settlement agreement!  As you can see, anything can happen to anyone at any time, and if this can happen to my family, it could happen to anyone.  This is time sensitive and is really really important to help those that are already in the system as well as for the thousands that are still waiting for help and whose parents are aging rapidly.  Thank you for passing this on to others and sharing the need.  More information can be found at http://www.thearcofva.org/

Here is our letter:

March 8, 2012

 The Honorable John Gibney

Spottswood W. Robinson III and Robert R. Merhige, Jr.
Federal Courthouse
701 East Broad Street
Richmond, VA 23219

Your Honors;

My daughter, J, who was able to get a Medicaid I/D Waiver after a 10 year wait on the URGENT waiting list, she is now 14, almost 15 years old.  We have had this for several years now and it is nothing short of a god-send.  When J was 1 year old, she contracted meningitis and was hospitalized for several months bouncing between the intensive care unit of MCV and Children’s Hospital of VA.  My vibrant, typical, healthy toddler could now do nothing on her own, not even the skills of a newborn.  She could not suck, lift her head, roll over or focus her eyes.  She lost her hearing, had a bilateral stroke which resulted in loss of coordination in her muscles as well as right sided weakness, the scaring in her brain resulted in hydrocephalous and a VA-shunt, she also started having seizures and needed help eating via a tube.  We had years of therapy, specialists, medication, continent care supplies and formula that came directly out of our monthly paychecks, hundreds of dollars a month.  But that was only one cost.  The other was time; time that I did not have to spend with my husband or other children.  As J grew older, it became more difficult to care for her as well as to help my mother with my father’s failing health and subsequent hospice, but we did our best.  An aide in the home to help with Jasmine’s daily care and personal hygiene needs would have been wonderful to have at this time in our lives.

Today, J needs help in all areas of daily living.  She is able to use a walker at school for her main means of getting around, but requires a 1:1 aide to be with her, direct her and make sure that she does not have a seizure during this independence.  She can finger-feed herself or lift and use a loaded fork and drink using a straw, but continues to need a feeding tube (or “button”) for her medications and supplemental formula in order to keep her weight up, as she burns more calories than she can intake orally.  She also continues to need assistance with dressing, bathing, continence care, brushing her teeth, food preparation and meal time, walking support, and communication since she is non-verbal.  She does not have any survival reflexes… if she begins to fall, she just holds onto the walker or falls from the couch head-first where most people would brace their hands to catch themselves.

Above is a list of all the things that J needs help with, that she can’t do and how her “diagnosis” on paper looks.  Now I am going to tell you what she CAN do!  She can make the dreariest day brighter with her sparkling smile and easy going attitude.  She absolutely LOVES to go to school or to her Challenger Baseball games or just out to eat with the family. She giggles when you tickle her and lights up like a firecracker at the sight of her father after work.  J shines when she is able to do things with her peers and wistfully watches younger kids out playing in the street.  A personal care aide through the respite program allows her to be a kid during the summer.  She gets to go bowling (without her mom, because, let’s get real…what 14 year old wants to always hang out with MOM??!), to the movies, go to the mall, to parties, the pool, horseback riding, and out to eat.  She even enjoys SKATING!  She is able to have someone with her that can help be a bridge between her and those outside her normal sphere.  She gets to be more independent. That she can have any independence and make decisions for herself is our greatest wish for her, one that most people take for granted.  I know I have.

This is why it is so very important to fund the Medicaid waiver program.  The people who have the most challenges also have the quietest voices, you have to stop and listen to their whisper… because although it comes out of their mouths a whisper, their hearts are shouting to be heard.  There is not enough funding to help the ones that are already waiting.  There is a huge group of people who have been waiting years if not decades for their loved ones to get some help.  We don’t want to have our family members shut away behind doors, we want them to be here, with us, out doing things that they can, however they can.  I would love to see J have her own place someday, where she is able to decide where she wants to go and what she wants to do.  Our greatest fear is what will happen to her when we are gone or even if we are unable to oversee her care.  The Agreement provides protections, oversight and more accountability that is so important. 

 I plead with you to require more of us as a State, more of us as a society, to care for those that cannot (not won’t, but can’t) take care of themselves without outside help.  I am a voter.  I am a taxpayer.  I am a mother.

 Sincerely,