Legal Considerations

Two issues arise as your disabled child grows up. First, when your child turns 18, hippa privacy laws require that medical information only be released directly to your son or daughter unless they have authorized you to receive it. If your child has limited communication skills, like mine, this can present a problem when you need to speak to someone over the phone on their behalf. Naturally, when you speak to a medical professional who can see your child in person, or who knows them, they will understand that you need to represent the interests of your child. However, there are times when you may need to ask for lab results over the phone, or speak to the health insurance provider, and the person on the other end of the phone won't speak to you because your child is an adult and this person can not see that your child can't speak for themselves. In this instance, it is helpful if you can establish that you have legal guardianship, if the severity of the disability requires that you communicate with medical professionals on behalf of your child.
I have obtained guardianship of V to address these issues. There have been times that written proof of my status as guardian have been required. I was lucky to have an attorney who is a personal friend and did the legal paperwork for free as a favor. I was lucky because it can cost thousands of dollars to hire an attorney to do this. If you can not afford to hire an attorney, it may be possible to represent yourself or get advice from a legal aide office. If you do pursue this avenue, a temporary guardian will be assigned to your child to represent their interests. You will be required to have at least 2 physicians complete documents that indicate to the court that guardianship is necessary. Then, once the guardianship is approved, you have to file forms once a year with the court, documenting what you are doing as guardian. This is not complicated or difficult.
The other legal matter to consider is the need to set up a Special Needs Trust for your child. If your child receives medical assistance or other services and you die unexpectedly, the inheritance that your child receives from your estate could disqualify them for the services that they depend upon and disrupt their lives in ways that would not be in their best interests. With a special needs trust, you can indicate that inheritance or life insurance proceeds go into the trust upon your death, where the funds will be managed by someone you designate, and where your child will be protected from the disruptions to services that might occur otherwise. If you do set up the trust, then make sure to provide grandparents or anyone else who might leave money or assets to your child with the trust account number and direct those parties to be sure to leave any inheritance to the trust rather than directly to your child. The special needs trust funds can be used to purchase the extras that the state will not provide for your child after you are gone.
It has given me peace of mind to have these matters taken care of and to know that I have done what I can to provide for the future. You don't have to fund the trust with more than $100.00 at the beginning. It won't be needed as long as you are around. If you are in my area and want the name of the attorney I used for the trust, I would be happy to share the name with you.

Always Finding Solutions- Incontinence Products

If a way can be found to have your child/ adult consistently use the toilet, that is the best solution, of course. But, if that has not been possible, for whatever reason, and you need to use disposable undergarments on your teen or adult child who is too large for the Goodnights products, then Depends and the store brand generic equivalents are useful. For years, I bought them for V, paying out of pocket, at local stores. No one told me that these products are covered by medicaid, can be ordered over the phone and delivered to your house on a monthly basis. I found this out when I discussed the need to cover the expense of these products in V's DDA budget for her adult plan. At that time a DDA employee explained that it would not be necessary since medicaid covers these products. Sure enough, I called Amerigroup, which is the plan that we have selected, and they referred me to Medi Rents & Sales. MediRents got a prescription for Depends disposable undergarments, chucks for bedding, and disposable latex or vinyl gloves, to be delivered monthly and fully covered by the insurance.
Unfortunately, after a year, MediRents decided not to carry Depends and switched to an inferior generic product that was ineffective for V. A few phone calls later, I located another company, Edgepark Medical Supplies, that could provide the products that I needed and we now use them instead. I like Edgepark better because they send the products out automatically, without waiting for me to call them to re-order. They have a website that shows the customer when the order was sent out and gives a tracking number so that the customer knows when the order will arrive. I never run out of supplies now and don't have to worry about whether a store will have the products in stock in the right size and absorbency, the way I used to.
So, if your child needs these products and you have medical assistance through a state waiver program, stop buying your incontinence products at the store. The only thing you need that is not covered is the wipes. See the link at the top of the page for Edgepark.

Always Finding Solutions - Hair

For many years, V had long hair, that was quite pretty when brushed, but always fell forward into her eyes and mouth. I always had to pull it back into ponytails or braids, but it continually tangled into knots and fell out into a halo around her face. She hated getting the knots combed out. A short hair cut was a problem because she wouldn't sit still in the stylists chair and I couldn't even be sure that she would stay in the salon at all for long enough to complete a haircut. A short cut would require frequent trims and all the problems presented by that. One day I had enough and decided to take the scissors to her hair and cut it short myself. It was okay, but not a good cut. However, it was much easier to wash and dry and it stayed out of her eyes and mouth and didn't get tangled. So, I set out to get her a decent short cut and maintain it properly. I went to our local mall where there is a Cartoon Cuts that specializes in cutting children's hair and I asked the receptionist if any of the stylists would consider making home visits to do hair cuts. One stylist only lived 5 minutes from my home and was delighted to come to our home to cut V's hair in her playroom. Now, V has her own stylist come to her room about once every 5-6 weeks to give her a trim and her hair looks very nice. It doesn't cost more than it would to go to the salon and it is far less stressful for everyone. I have recommended the stylist to V's nurse, who also has a disabled daughter, and this has solved a problem for her as well.
If visiting a hair salon is problematic for your child, give this a try. No more messy ponytails or unprofessional looking haircuts for V!

Always Finding Solutions - Clothing issues

Today I posted a new link to a company that solved a problem that has come up a couple of times over the years. Buck and Buck is an online store that sells clothing for residents of nursing homes, and all of the models are quite elderly. However, I have found that my daughter has shared some of the behavioral issues that are also associated with the behavior of patients with alzheimers, including disrobing at inappropriate times. This has always been the expression of frustration when there is nothing else available on which to physically act out that frustration. Buck and Buck sell jumpsuits that zip up the back and are made from the same material as a soft, warm sweatsuit. I found that by purchasing several of these jumpsuits and having her wear them for a while, she eventually learned that removing her clothing was not an option and stopped trying. Then, we were able to resume the use of her normal clothing. Under ordinary circumstances I buy clothing for V that can be most easily put on and taken off independently by her, but when the disrobing behavior escalates, the jumpsuits preserve her dignity in public and extinguishes the behavior without the need to physically block it by anyone. We all know that the less attention that is given to a behavior, the sooner it stops, and these products hold up to a lot of pulling without tearing. I tried some other products, but they tore at the seams when she pulled on them and didn't hold up well when laundered.
If your teenage or adult child has this problem, here is one solution to try that worked for me.
Do you have trouble taking your adult child into clothing store dressing rooms to try on outfits? Well, did you know that Lands End has an online store with a "virtual Model"? All you have to do is take your child's measurements and type them into the program. The program will show you what the outfit will look like on your child's body type and what sizes you should buy. So, you have an option to buying clothes, trying them on your child when you get home, and returning items that don't fit.
Need shoes that your child can put on and take off easily, but won't fall off when you don't want them to? Easy Spirit has a product that has been great for V. It is a suede shoe, like a sneaker but no fasteners or laces of any kind. It is very soft and doesn't leave blisters, even the first time it is worn and it comes in many colors.
Those are a few solutions that I have found. Please post the solutions that you have found!