*I apologize if this message seems redundant. I sent this e-mail to everyone in our address book. I thought that by posting it on our blog, we could get the word out to even more people.
Dear Friends and Family,
I know that I haven't spoken to some of you in a very long time, years in some cases. But this e-mail is about our daughter Della Belle and I wanted this information to reach as many people as possible. Soon after she was born, Della was hospitalized with a virus and had to be put on a ventilator and received a blood transfusion. Although she recovered somewhat, by 6 months she was not developing normally. Extensive tests showed that Della either had a metabolic disorder or mitochondrial disease, there is no cure for either condition. Three years later we still have no diagnosis other than "mental retardation". Della functions at about a 12 month level although she is 3.5 years old. She can't walk or talk and she can only retain 2 or 3 words in sign language at this time.
A few decades ago professionals would have told us that we should place Della in an institution. Today families are taking more responsibility for their disabled children's care and keeping them at home for as long as possible. Most families spend between $30,000-$70,000 a year on services, therapies, treatment, and adaptive equipment that private insurers only partially cover or refuse to cover at all. I can attest to you that this is true. We did all that we could to pay for therapy, tests, and treatment. We took a second mortgage out on our house and when that ran out we desperately appealed to family and friends for help. Eventually we had to "short sale" our home when the real estate market crashed and we left our family and friends in California to move to the much more affordable Houston.
Onto the real purpose of this message. Home and Community Based Service Waivers and Medicaid Waivers (there are 7 total Waiver Programs here in Texas) provide services, therapies, treatment, equipment, and group homes for adults with developmental disabilities. The demand for access to these waiver programs far exceeds their availability. This discrepancy has resulted in waitlists. Tens of thousands of people are currently on waitlists to receive access to the help that their children desperately need. Waiting times vary from state to state but the average waiting time is between 5-10 years with the longest wait time being almost 30 years. You read it correctly. Years. Della is currently 2 years into an 8 to 9 year wait. If you move out of state, you lose your place in line and are automatically placed at the bottom of that state's waiting list. This is devastating to families in the military or for those who have to refuse better or higher paying jobs out of state. Please sign this online petition appealing to Congress and the President to end waitlists. That is all I am asking you to do. You don't have to give money, or mail something in, or make a phone call. Just click the link and "sign" the petition. For more information on the grassroots efforts of parents and other advocates on behalf of the disabled, please click this link to NOEWAIT: National Organization to End the Waitlists.
Thank you so much for taking time to read this. Please forward this to anyone that you would feel comfortable contacting. Hope all is well.
The Calder Family (Chad, Caitlin, Archer, and Della Belle)
2 years ago