Our son Dalton is going from ambulatory to non ambulatory very quickly. We don't know what to do. Right now we are standing him from his chair and lifting him to the toilet and back and also to bed. Our apartment is small so i dont know about medical lifts. He is 11. Someone at children's told us pull-ups are an option but where do you go to  change him when your out in public? What I need is someone willing to have a no nonsense discussion with me about these issues. Also, we cant find day care that will take him so my wife is forced to stat at home. Dalton gets SSI but are there other programs that can help? we are in Texas. What about home health aids and Medicaid? again, we're in real need. God bless.

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I do not have expertise to address all of the questions, but I can tell you about the medicaid. We are in VA so the rules in texas may be different, bit I am hoping there should be a similar program. In VA, there is something called ED/CD waiver, if you apply for that, and if they approve the application,then they can either provide a home aid or you can choose an aid and they pay for that. There is no waiting list for this kind of waiver.

We also have a medicaid waiver, which has years of waiting list. But I can have my son in ED/CD waiver and then once the medicaid waiver is available, he can switch to that.
Rick,

This can be scary, but just take a few deep breaths.

Call Medicaid and ask about whether there are any agencies that hire parents as CNA's. In Colorado, we have a few that do. It is a great program. Your son should be eligible for home care, so the question is will they pay parents to do it. The primary agency in Colorado that has mostly relatives as caregivers is PASCO, 303-233-3122 if they have questions. (Talk to Barry or Laura)

Parents are great care givers because they care about the child's health personally, will be more careful with their child, don't get snowed or hurrican-ed or ??? out, don't get mileage. The agency loves it because we are always there and on time. We will always do their care as prescribed. The kids are much healthier, so Medicaid loves that. And the pay is not counted towards Social Security. You will have to get trained as a CNA, but that is not too expensive and does not take long.

If Medicaid won't do that, try to find a buddy who will provide care for your son and then you provide care for theirs and an agency that will cooperate on that.

There is a lift called a Hoyer and you can get him a shower/bathroom chair. In my son's case, I put the Hoyer sling on him, lift him up and put the toilet pot under him on top of two or three pads on the bed. When he is done, I remove the pot, and wipe him. Then I put him down on the bed and dress him, dump the pot and use Clorox to clean it. Try to train him to go in the morning and at night. My son's Juven seems to help with that. Your son should be old enough to learn to do that. Ask you doctor or nutritionist about a change in diet or any other suggestions. Not enemas - they can affect the bowel health, which is already somewhat at risk.

My son uses a hand held urinal in public. I am not sure if there are external catheters for kids, but are trying them out. Your son may be able to use one. For the external catheter question, you might check with the people who handle ostomies (the nurse, not the Dr.) to see if they know of one.

It is illegal, I believe, for a daycare to turn him down, per the ADA. Check with your local ARC, They should know for sure.

Any parent on this list who cannot be very clear, honest and graphic about what needs to be done, is probably in trouble. Think of yourselves as nurses (male and female). They can talk very bluntly about everything if they need to. Other people on this list will respond and will not be embarrassed. Our son's lives are at stake.

Ginny
Colorado

PS If anything is not clear, just ask me again. My son is 19 and about to go to college. Is your son on deflazacort?
Diapers should be absolutely the last resort. My son is 29 and has never used them. You might call your local MDA office and ask if their loan closet has a Hoyer lift and rolling commode/shower chair. There are even attachments for your bathtub that you can attach the Hoyer to. We have a rolling bathchair that "docks" to an insert inside the tub and you roll the seat over the bathtub. Use a handheld urinal and elastic waisted sweatpants. Does he have an aide at school to help him pee at least? My son uses an external catheter system with legbag when he is at work. You need to contact his SSI social worker to find out about more help for him. If he is on SSI he should get Medicaid, which means aide "hours" that may include parents as paid aides. Get on the phone. Leave no stone unturned. Good luck!
Dear Rick - what you are going through is very similar to our situation. Our son Saij (almost 8) lost ambulation one month ago, and we found ourselves completely unprepared. We have been informed that our son is eligible for Medicaid. At least in Maryland there is something called a Waiver program (to allow enrollment of in Medicaid for someone who is less than 65 years old) and a REM (rear and expensive case management) program. Enrollment in these will automatically qualify for Medicaid. The other thing I have been informed is that enrollment in SSI entitles you to Medicaid - although there may be a 24 month lag before Medicaid kicks in.

In speaking with other DMD parents, I can tell you that Dalton IS eligible for Medicaid. You need this to get him all the 'tools' he needs to prepare him for the non-ambulatory stage - such as a power chair, a shower stool, a tall toilet seat, etc.

Stay strong, and stay focused on getting him on Medicaid and getting him the power chair. And don't forget to take care of yourself in the process - If you don't take care of yourself, you will not be able to care for him.

God bless!
If your son is on SSI he is eligable for medicaid which provides for PCA services. Take your SSI statement and call your local/county office and apply. I'd also call your local public health nurse and see what they might recommend as they are familiar with all the local support services.. Is your son on steroids as this is very young to lose ambulation? Do you have a urinal? Our son who is 18 1/2 and weighs 95 lbs, I use a "beasy board" to slide him onto his power chair or shower chair, you may want to google that.

Good Luck
We live in Texas. Our son is 14yrs old. Justin doesnt receive SSI, but is on Medicaid. There are two absolute must programs in Texas that you need to get your sons name on the waiting list for. MDCP and CLASS. The waiting lists are long, but you can call your local state representative to possibly get your sons name moved up to the top of the list. SOme friends did that and their son was placed where his name would be if they had enrolled him at the time of diagnosis. MDCP is a program that lasts through the age of 18 and CLASS is a lifetime program. They both provide attendant care and respite care. Under Texas law, the parents canNOT be the paid attendant unless the child is over 18yrs old and on CLASS(I honestly do not know how it works with Medicaid PCAs, we never used that!). Our daughter just turned 18yrs old and she is now Justins attendant. Since your child is on Medicaid, they will pay for a basic Hoyer lift. You just need to get a script for one, One last thing, as for the daycare. The ones around here, do not take kids between the ages of 11-12yrs old or older, so I am not sure if they are denying taking him on a medical basis, or if they said why they wont take him? Any other questions, just ask. I will help if I can!

--Samantha

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