When my daughter turned 18 and the transfer of rights occurred, I had to do my own research. I knew it was important to put something in place. And it seemed like the professionals in her life were urging me to get guardianship. But at the time, I had no idea what that would look like for us.
Most parents know what support their adult child with a disability needs in terms of decision making. We’re always evaluating their needs as they age. The first thing I did was put a Supported Decision-Making Agreement in place. An SDMA allowed me to support her in different settings such as school. But it did not allow me to make decisions for her.
I also got Medical and Durable Power of Attorney documents. These are all legal documents in the state of Texas. They are also free and easy to access. My loved one walks and talks and can voice her wants, needs and opinions. I learned to keep the forms in a safe place. I also kept digital copies on my phone.
My daughter has a moderate developmental and intellectual disability. She was unable to make medical decisions for herself. This is where the MPOA came in handy. It’s important to note that with these options, the person can choose to revoke one or the other at any time they wish.
In addition to the Medical POA, I requested that a Health Insurance Privacy and Accountability Act Release Form be kept on file at each of her doctor’s offices. HIPAA forms allowed the doctor to release her medical information. At this time, her team included a primary care physician, dentist, ophthalmologist, and an ear, nose and throat specialist. She did not have high medical needs.
Next, I applied to be a representative payee for her Supplemental Security Income payments. This allowed me to manage her finances and bank account. Though she was independent in other ways, she needed maximum support when it came to managing her money. It also allowed me, on her behalf, to handle her annual Social Security Administration reports for her.
The less restrictive options worked well for our family’s needs for several years. And then life happened. Things changed. And in her case, her health changed. She had a cognitive decline. Over the course of a couple of years, I began to re-evaluate her needs. She lost many of her abilities. She began to require more care and required full support in decision-making. Things change and you have to make adjustments sometimes.
For us, guardianship was a celebration. My daughter was happy to have someone in her life whom she trusted to be responsible in all aspects of her life. And for me, it really took a huge weight off my shoulders. It gave me peace of mind.
Visit the Legal Rights of People with Disabilities for more details.
Listening and learning from adults with disabilities helped me learn so much about my son and his future.