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.