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.