A family's story...

These past months I have had the priveldge of advocating for a family who needs funding...

My family's mother has a two-year-old son with a genetic condition called 18q-. Her child has extensive needs that require him to see four to five specialists per week. Among the therapies her son receives are a routine therapy, music therapy, and oncotherapy. The professionals say he is delayed by about six months to one year.

Although she and her son are lucky not to have any critical medical needs at the moment that does not give her reason to calm completely. She is currently five months pregnant and her twenty-five pound son is still not walking. It troubles her to think about what she will do when she can no longer carry him. She used to have respite or daycare to assist her; however, it is no longer financially possible with all the expenses she incurs since the DDA cut their Rolling Access as of November 30, 2009. She no longer receives $3,000 per year, which helped to cover her son's therapeutic equipment. Now she only receives a mere $ 3,000 for her son's lifetime. She is forced to pay $8,000 per year out of pocket, which covers only about 10% of his needs. The only other financial assistance she receives now is from her insurance, which attempts to cover the rest of her expenses. Additional expenses for her include paying for gasoline. Presently, they have 3,500 miles on their car as a result from visiting therapists and specialists, and commuting for surgeries.

Although LISS was implemented in place of Rolling Access, she still has no access to it, as it is not reasonably obtainable. LISS requires one to exhaust every resource before one can even be considered eligible.

Although she has been on the Waiting List since her son was one, she does not benefit from any services.

She would be thrilled and grateful if the old system of $3,000 per year returned, even $1,000 per year would be helpful for their family. She knows that in the long term receiving help from the government would save the government money in the long term. Respite care is not as expensive as institutional care; and if her son is supported and continues with his therapies now, he won’t need a $10,000 wheelchair five years down the road, which would only incur more cost on everyone involved.

Her son will be able to walk with therapy, without he will need a wheelchair. Why does she have to make this choice?

She is also worried about the future, when she is elderly, when he is elderly. Will her son still be on the Waiting List?

Despite these worries, she continues to live every day and make the most of her situation by focusing on the positive. She does her best to make a difference in her community by using the blessings she has to help other families in her community with needs like her son. She recognizes the need in others and serves her community. If everyone was like this, then I believe everyone would be able to receive the help they may need.

She spends her energy in helping her son the best way she can with the resources at her disposal as well as helping her community. She has a genuine financial need, but she recognizes the need in others too. Maybe by making a difference in other people’s lives, one day someone will help her too.

I hope that everything will be done in the government's as well as our own power to keep the possibilities of the future positive and encouraging, the wellbeing of this family's son and so many others depend on it.