Dear Sirs,

I am the parent of a 22 year-old female with ID and Autism.  It's an embarrassment how the state of Virginia provides support (really lack of support) for individuals with nurological disabilities.  The long and continuously growing waiting list to access the DD Waiver is a major concern for my family.  We would support any consideration on an 1115c Waiver, or other federal contract, that would not allow a waiting list for basic care services. 

For individuals on the waiting list like my daughter, I am extremely concerned about the age of the primary caregiver(s) not being considered in assessing waiting list priority. My wife and I are in our late 50's and wonder how long we weill be physically able to care for our daughter.  However, our relatevely good health disqualifies my daughter from receive the waiver she needs.   Do we need to be near death or dead and burried for our daughter to receive a waiver?  Since the new regulations have been in effect, I believe aging caregivers, such as myself, feel it is criminal to downgrade my daughter on the waiting list because we are able to provide limited care.  This situation creates a great deal of stress for us and how will care be provide for our daughter in the future. No matter how healthy we are, we are going to reach a point in the near future where care must be provided by someone else. Additionally, the removal of this eligibility for Priority One reduces the odds that my daughter will be able to access services notably before, or at all before, one of us dies. This is setting up my daughter for a series of rapid crises, as she looses  her parents, must navigate the service system without a support system. I strongly propose that the age of the caregiver again be considered as a factor in determining eligibility for Priority One of the waiting list. Parents 55 and older should be considered, with higher priority.

The terminology used in association with the Priority One, Two, and Three tiers is confusing and misleading. To explain these categories in terms of years someone could be expected to wait for services furthers the notion that our system will always have multiple years of wait time for people determined eligible. My daugher has been on the Waiting List for well over 10 years, this is outragious and provides no hope that she will ever receive the services she deserves.  It frames our future in an incredibly negative light and is disrespectful to people who are eligible for assistance immediately, but who have been failed by our state’s continuous failure to budget for Waivers. Additionally, the usage of years of wait time to explain the Priority Tiers creates confusion to my family as we navigate the system and there is no guarantee of a timeline for when services will be made available.

Our daughter's future looks questionable at best.  She is unable to provide care for herself and relies on others for the most basic of assistance.  With continued therapy, Sabrina can learn to provide care for herself and to be somewhat independent.  Without, Sabrina will need intense care for the rest of her life and will need to rely on others for all areas of support.  Providing waiver supports now, will save the State of Virginia over her lifetime as she can learn to do more for herself with lower levels of support.  The current system is just a disaster and will cost every taxpayer much more in the long run as Virginia makes the poor choice not to provide the services these individuals desperatly need.  

Thank you,

Steven R. Jones, CAE; Burke, Virginia