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...

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.