Header for Ability Mission

Disability Grant To Help Woman Care For Grandson Stricken With SBS

by Diane
(Green Bay, Wisconsin, USA)

My name is Diane. I'm a 53-year-old grandmother struggling to care for my six-year-old grandson. He is diagnosed with shaken baby syndrome (SBS).

Due to his injuries he is blind and does not know how to chew or swallow food and so is fed through a feeding tube five times daily

He cannot walk or crawl and so needs a wheelchair. He suffers from severe mental setbacks. He will be in diapers for the remainder of his life.

He is six but is at the level equivalent to a two year old. He has a vocabulary of maybe ten words.

When I first obtained custody there was a caseworker assigned to his case under the CHIPS program; however, once I satisfactorily completed all the classes and probationary period his case was released from CHIPS and that caseworker.

I just recently found out that he then should have been assigned to a new caseworker and that without one I do not have access to all of the help available to him.

He has a wheelchair, which he currently only uses to get back and forth from school. I cannot use it for him in our home as I have no way of getting in the house without a wheelchair ramp and it is too heavy to lift.

Because of this I have to lift him out of bed, carry him through the house, out the door, down the stairs and across the yard to the detached garage just to get him in it and vice versa after school.

I have no way to get the chair into my vehicle for when he has doctors' appointments or I need to run errands. This means that I have to carry him to the van, load him into it, and carry him wherever we go.

I do not have any sort of lifts in my home to transport him in and out of bed or from one room to another or to get him in and out of my claw-foot tub for bathing.

He is already 57 pounds and over three feet tall and growing rapidly. He is almost too heavy to carry which is dangerous for both of us. It scares me to think what will happen when I can absolutely no longer lift or carry him.

I know that there are programs and federal grants available out there but don't know how to get them.

I am in desperate need as I am all the family that he has left and do not want to have custody taken away and him placed in a facility.

Please help me keep my family together and make sure that he is properly cared for now and after I'm gone.

Comments for Disability Grant To Help Woman Care For Grandson Stricken With SBS

Average Rating starstarstarstarstar

Click here to add your own comments

Mar 21, 2010
The Morgan Project.. Offers Help...
by: Katina

Let me first say that your story moved me to tears. It is hard reading some of the stories published especially when there are small children involved. Your grandchild should be eligible for some or all of the following programs (depending on your current income / assets... other criteria).

BCMH: Bureau for Children for Multiple Handicaps -- Health Assistance, (Children's Hospital, I believe).

Social Security Disability

Food Assistance / Medicaid

Additional Support:
Morgan Project -- organization set up to help assist children with disabilities.

You can also look up the Association for the Blind and Dyslexic.

I can't imagine what you have had to go through with your family?s situation, or raising a child with such severe disabilities. I had a premature baby and went through a lot of hospitalizations with him at Children?s Hospital. It was a hard journey; I couldn?t have done it alone.

Thank you for posting your story. I wish you the very best now, and in the future.

Katina from Accessible.org

Click here to add your own comments

Return to US Wisconsin.