Thursday, March 15, 2012

Step up to the Plate Virginia

Remember when I blogged in January how proud of Gracie I was when she stood up front of the The House Appropriations Committee and Senate Finance Committee public hearings and stood up for her brother who is just one of 7,000 individuals with an Intellectual or Developmental Disability who are on a waiting list to receive a waiver from the sate?  Remember the news clip that went viral and showed me crying like a baby?

Well, on January 26, 2012 the Commonwealth of Virginia and the U.S. Department of Justice announced a historic settlement agreement that would transform Virginia’s system of care for people with intellectual and developmental disabilities (ID/DD) from one that is reliant on large segregated institutions to one that is focused on integrated, community-based services. The agreement will help thousands of Virginians with ID/DD avoid unnecessary institutionalization.

The settlement agreement is now in the United States District Court, Eastern District of Virginia. Judge John Gibney will decide whether to approve the agreement. While this is great news, unfortunately some people in Virginia are opposed to Judge Gibney signing the agreement.  Can you believe that?  Did you know that the state of Virginia ranks 45th in the Country of how we fiscally manage our children and adults with ID/DD?  Read this article to learn more about this and the horrific findings from the Department of  Justice.  What does that mean for Ethan, you ask?  Read this letter that I sent to Judge Gibney to find out...

Dear Honorable John Gibney,

My son Ethan is 3.5 years old. Ethan was born with multiple birth defects. He is developmentally disabled, Intellectually Disabled and physically Disabled. Ethan can not feed himself, dress himself, he has just started walking with the assistance of a walker and leg braces. Ethan attends a Special Education Pre-school 4 mornings a week through Hanover County Public Schools. He is unable to communicate with other children or adults his needs or wants. He can be very aggressive and violent due to his communication delays.

Ethan also has many medical issues. He was born with bilateral kidney reflux/Grade 5. He endured five surgeries in the first year of his life. He still struggles daily to fend off kidney infections. Due to this condition, he takes an antibiotic daily. Both of Ethan’s kidneys are damaged. We know that one day he may need a transplant. Ethan has asthma, we must give him 3 nebulizer treatments daily just to keep his lungs clear. He is very susceptible to infection and in his 3 short years has been hospitalized three times for RSV and pneumonia. He also must carry an inhaler with him at all times. Remember, earlier that I told you that he is non-verbal so his caregiver must always be diligent to ensure that Ethan does not has breathing issues as this could quickly take his life. He also suffers from reflux and takes a daily medication.

Typical 3.5 year olds are independent at this age. Ethan is not. Ethan can not be cared for in a regular daycare setting or by a typical babysitter. Ethan functions at the age level of a 12-18 month old baby.

We want to take care of our son in our home so that he can thrive and have the best possible life with us and his brother and two sisters. Ethan needs the services provided in the ID Medicaid Waiver. He needs in-home care so that we can work to provide for our family. He may need behavioral therapy as he gets older to help manage his aggression and not have to be institutionalized.

Ethan is currently on the Medicaid Waiver Wait List with thousands of others in Virginia for the ID/DD Waiver. Please consider signing the DOJ settlement agreement. This would mean that our amazing son would have a life that he so deserves.

If you agree that Virginia needs to step up to the plate and Judge Gibney needs to sign this agreement please write him a letter:

The Honorable John Gibney

Spottswood W. Robinson III and Robert R. Merhige, Jr., Federal Courthouse

701 East Broad Street

Richmond, VA 23219

He is accepting letters until April 9, do it for Ethan and the other 6,999 adults and children who just want to be cared for, loved and grow up with their families and not in an institution.

Do it for him...

No comments:

Save Babies From Premature Birth