United Brachial Plexus Network, Inc.

Ok. I'm sure we're all in the same boat with all the therapy time, appointments and various machines taking up the majority of our day. I have to go back to work very soon (full-time is 80 hours/week!!...I can only reduce it a little.), and childcare for a 5 month old with special needs appears very costly and daunting. Our regional center will only help us with funding for 16 hours a month. Are there any services you guys know of for both great chilcare help and also financial assistance (for disabled kids) I'm finding we are in a 'grey' area, not qualifying for anything I can find. Grrrrr!! ...Hope you guys have some ideas...

Have you tryed Social Security? Frankie got on it was he was a baby they helped out financially and covered the OT/PT when my insurance didn't. As far as child care I never did find anyone even my own mom was afraid to hold him. Everyone was scared of hurting him. Mare

Set the bpi issues aside... what were your plans going to be? why can't you follow your original plans?

In response to what my original plans were... We found a great lady with daycare at her house for @ $150/week for 12 hour days. She only feeds the babys from scratch; no pre-made stuff. However, there is no way she has the time for all of Hannah's exercises, etc. I've contacted other daycare places and they all tell me they don't have the time to help her either with her needs. A private person will be a few times the cost. By the way, if we go even a few hours without doing her ROM her joints get really stiff. Even if I send her to daycare and have another person there two or three hours just for her, it wouldn't be enough.

Mare, thanks for your response. Hannah isn't eligible for SS b/c of what we made last year. Unfortunately, it doesn't matter that I've been on disability since last April and that she's disabled.

In Florida we have something called Children's Medical Services, a state run program that assists children with special medical needs. One of these services is called PPEC. It's a daycare program for children who require medical assistance throughout the day, including OT/PT. Most of Children's Medical Services are run by the Department of Health for the state you live in. Best of luck to you. Wish we lived closer, my mom is a pro at taking care of Sidney and doing all of her PT/OT throughout the day. She's been a god send. If your mom is hesitant, take her with you to your child's physical therapy appointments and have your therapist get your mother involved and help convince her she will not break your child. It could be worth a shot. Best of luck!

Beth,

I would like to talk to you privately. Can you email me (my address is on my profile). It concerns another family of a young BPI child in the LA area.

Kate

In NY State, if you can qualify your child for Medicaid Waiver Services, then you can get reimbursement for childcare services (family respite or otherwise) for a predetermined number of hours quarterly. It can help offset the money. Maybe there is a program like that where you are located. Contact a Medicaid Service Coordinator in your area.

Tanya in NY
Amber's Mom, ROBPI, 5 years old

I tried to get SS for my son also but they told us that he was not eligible because of what my husband makes. To me it shouldnt matter what he makes because it is not for him. Should i fight to try and get it for my son?

In NJ it goes by what you make 1st theres no fighting that period. I was under that amount but was told my child had to have more then one disability. We ended up in federal court. We didn't win but a child physcologist appointted by the judge said my 2yr old was ADD that was his second diability so he got it (My son is not ADD and never was) the lawyer got most of the money. Frankie was on it for 1yr then his dad started paying child suport and it was stopped. I made 10 thousand a year at that point they stopped SSI said I wasn't low income anymore. Mare