MOST HELPFUL POSTS
Erin - posted on 01/07/2011
We are immigrants on temporary work permits so we get very little assistance. I've had to be more creative than most. My best advice is to be open to finding unpaid supports or cheap ones. For example, when my daughter was about 2, two 12 year old girls came by for a school fundraiser. They were soon working for me for $3 per hour, just playing with Maggie while I got stuff done. One of them still works for me almost five years later and is invaluable, she's one of Maggie's closest friends and supporters. Older siblings of Maggie's friends and classmates have been so helpful. They can keep Maggie busy and entertained, can push her wheelchair in a store, can sit in the car with my girls while I dash inside for a prescription, can sit next to the tub while the girls bathe and I fold laundry...
We also make good use of volunteers. Maggie gets support in Brownies from her friends and from a university student who volunteers to assist her. Mag has another volunteer from the university who is teaching her to swim and a 3rd who is arranging tours of real estate open houses because Maggie is hopelessly nosy and loves checking out other people's houses. We've found volunteers through associations like Community Living, an organization for people with developmental disabilities; through the autism volunteer group at campus; and from the local high school. A girl who is earning her community service hours helps with our Brownie unit as well.
I've been trying to figure out how to get some custom-made educational things for Maggie, like a template made of wood with her name cut out that she could put a pencil through and write her name. I've been talking to the director of the wood shop at our local senior centre. He thinks the seniors would LOVE to make things for her if we just purchase the supplies.
We want to make Maggie a vest with internal pockets that hold one-message speech devices, a "talking" vest. I know a girl who has one and it has her name on one shoulder, a greeting on another, and single words like yes and no. Its so easy and natural for her to hit the buttons this way. I got a quote from a seamstress that was outrageously expensive so I called up some local Girl Guide leaders and asked if anyone had a few older girls who could earn a badge doing this. So now we're getting the vest for just the cost of fabric!
I would just keep in mind that while getting funding is important, ultimately, the best is when we share our lives with other people and they give and receive without payment. Every time you let a volunteer into your family life, you are giving someone the opportunity to build their resume and work experience while getting to help someone who needs it. Your child will reciprocate, he'll touch the lives of people who help him, and it will be very cool to see this happen. So look for financial help wherever you can but don't overlook free assistance!
Sabrina - posted on 01/16/2011
I would contact your local children's hospital. My daughter goes to a children's hospital 2 hours away and every week they have a special activity for them weather it is a picnic at the park or at the zoo they always have something for special needs kids. I also have special needs medicaid (Children's Medical Services) and they usually have local events where the kids and parents can get together and do something.
Susan - posted on 01/11/2011
Check with Childrens Medical Services. I think almost every state has it. There are also special groups that would help. My son has Spina Bifidia so the Spina Bifidia Association will help. Also in Arkansas there is the Spinal Cord Commission. Also check with your local Shriners Club.
Edith - posted on 01/11/2011
one more thing. I can not recomend horse therapy enough. We saw children of all ages when our child got it. those with CP were move in ways they had never been able to before. We think our child walked when he did mainly because of it. He has downs syndorme.
Edith - posted on 01/11/2011
Have you been to Citizens with Disabilities? There is an org. named Families Helping Families in Louisiana that have helped me find information to help us. When we planed to move out of state they told me who to contact in the city we thought of going to. There should be something like that in most states. Again Citizens with disibiliets should be able to help find the equel there. Also check with the local collages. See if some of the students can help you as part of thier credits. I got some volunteer offers when I talked to a teacher (no school credits). The teacher had me bring my child in and speak to her class. That can work wonders. Have you tried any of the local churches? Some may help as an outreach, maybe help you get volunteers started. Good luck.
Angela - posted on 01/11/2011
Dorothea, I noticed that you want to try the horse therapy. Our horse program here has 'scholarships' available. and even if there isn't the money, they will NOT turn anybody away. Maybe you can approach these programs and simply ask how you can do them without the finances.
Bonnie - posted on 01/11/2011
see if your state has Katie Beckett. It is a medicaid program for kids who's parents are over the income limit for medical assitance. Check into your county social services. Our's is going to help us build an adatable bathroom for my son.
Kris - posted on 01/09/2011
if you live in PA you can get extra insurance. also, fundraisers help too. if you live in FL you can be a part of NICA. check them out even if you don't live in FL. www.nica.com the program should be in every state in the nation (IMHO). best of luck. it is difficult. I have bankrupted once taking care of my son. it's a big deal. lots of $$$
Erin - posted on 01/07/2011
PS: Maggie had an awful, inaccessible washroom. The tile was falling off the walls but we just didn't have the cash to rebuild it. We ended up getting a total bathroom remodel in a creative way. First, she was given a Wish from a Children's Wish Foundation and she got a hydrotherapy tub. The Foundation was willing to pay for the cost of installing the tub. The manufacturer donated the tub. Because it was a Wish project, we got tiles and some building supplies donated and a local contractor donated some of his labour. We held a community yard sale to raise money for part of it and the response was incredible, we raised $4,000. In the end, Maggie had a dream washroom, totally accessible and lovely. They enlarged her washroom into both her bedroom, the hallway and took over my old nasty laundry room. Now my laundry is right in the washroom so I have something to do while she bathes! Her tub is amazing, its a Bain Ultra tub with lights and therapeutic jets. Our total out of pocket was about $1,000, mostly for accessories. The total value of the remodel was about $20,000. Our fundraiser got lets of media coverage because it was a Wish project. So if there is ONE thing that you think would really transform your son's life, think about a big fundraiser and think about those wish foundations. Maggie uses her tub twice a day and its done so much to relieve her high muscle tone and spasticity. Plus, its wicked cool. She, her sister, and her BFF are all taking a bubble bath right now. The jets make the bubbles get huge! Its been a huge social thing for her since she just has such a fun bathtub. Anyway, just one more thought!
Shauna - posted on 01/07/2011
I think is different in every state but here in Georgia, we got help from Childrens Medical Services. They help pay for things insurance does not. We found out about it from our sons pediatrician. Keep asking around , Im sure they must have something similar in you area. good luck
Dorothea - posted on 01/06/2011
Thanks for your help Amy Lea. I live in Ohio. I feel I have a pretty good insurance system worked out, between our privet ins. and BCMH (Burea for Children with Medical Handicaps), but I would like to put Mike in some other,non traditional therapies that are not covered. (Swimming, horseback riding, stuff like that.) I'd also like to get him more of the basics but my insurance only covers 20 visits for each, PT, OT and Speech. He could benefit from more.
The waver lists in Ohio are crazy, and confusing.
Iridescent - posted on 01/06/2011
I put a post at the top of the page, and will leave it there. I would appreciate if people add the services they are aware of (not listed previously) under a state (or country!) header and what the services are for and cover, and the basic qualifying information. Also any excellent clinics in the state and what they are excellent for specifically, as sometimes it is very hard to find the correct one for what you need.
Iridescent - posted on 01/06/2011
Apply for grants through social services, and waivers. My daughter is on a CAC Waiver (hospital level care at home is who those are for). Most CP patients qualify for the CADI Waiver (group home level stable at home). Those are just the names used in Minnesota, but each state has them. Most areas have a waiting list, so apply asap! It's through social services, disability division. In addition, Minnesota has a Family Support Grant for those not on a regular waiver to cover excess expenses for that child. Medical Assistance is a federal program for legally disabled children with a family income up to 999% of the federal poverty level, and if you have primary insurance even, this would be a secondary to that child if the cost is less than the other out of pocket expenses you already pay. Items like medical beds, wheelchairs, diapers, feeding tube supplies, syringes, etc should all be covered by 6 years old.
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