ADA Story July 25: Jean Andersen
My ADA Story: Keeping My Family Together
By Jean Andersen
Jean Andersen and her son Sam visit the Executive Mansion in Raleigh Traumatic brain injury, or TBI, can happen to anyone, at any age, at any time. It can range from a very mild injury, such as concussion, to a catastrophic brain injury which can leave someone in a ‘locked in’ syndrome, where you can't move or speak. That's the condition my son, Sam, has.
Brain injury can affect you both physically, emotionally, and intellectually. It’s something we deal with 24 hours a day. Sam lives at home with us. I have seven children, and Sam is my youngest son. He’s 33 years old, and it is important to us that Sam live at home and be part of our family. It’s important that he is viewed as a person, not a patient. When we look at Sam, we see a son, a brother, a college student, an uncle, a fisherman, the guy who likes to drive the tractor. It’s important to recognize people for who they are, not for their disability.
Just like other families, we have family gatherings, we participate in activities, we like to go out to movies. We go out to eat, get out into the community. We like nature. And it is important that those activities are accessible so that Sam can participate, too. Our desire is for others in the community to recognize Sam, and other people with disabilities, as simply members of their communities. I very much support community inclusion. I think inclusion makes everyone better.
It used to be that a person with a severe injury, such as a TBI, didn't survive the accident or didn't survive a hospital stay. Now we have more and more people who are surviving their accidents and moving out of facilities and living within the community. It's important that they have access to health care.
In years past, a rehabilitation stay might have been three to four months. Currently, most people experience a rehabilitation stay of two to three weeks, and then they are sent to a nursing home. It's very difficult to return to rehab. It takes time to recover from traumatic injuries. Unfortunately, just as a person begins to recover, they have to leave rehab because insurance limits the number of days they will pay.
And, once back in the community, there is a lack of respite care for families. Mostly, there are not enough qualified people to fill the positions that are open, and especially for home care.
Aging parents is another issue that many folks are facing. I know that's becoming an issue in my home. They may have been caring for a family member for 15, 20, 25 years at home, and as they age, they need more and more assistance, and they don't know where their child is going to end up. There is a lack of sufficient community programs. Neuro-behavioral and neuro-medical residential programs are very, very difficult to find. In fact, many of the people that I speak to are completely unable to find appropriate assistance for their family members.
My family lives in a rural community. We are fortunate that we have our own transportation. But, for those who don’t have their own transportation, accessible transportation that's timely and convenient is non-existent.
The ability to participate as a family in all of our activities is something that we really strive for. And if we're going somewhere completely unfamiliar, I will either call, or sometimes we'll go visit and see what the lay of the land is so that we have some idea of what to do when we get there and what accessibility issues we may be facing.
Another barrier that we face is the lack of adult changing facilities. We have carried a folding massage table in the back of our van, just in case an emergency arises and we need to change Sam’s clothes. The only other choice tends to be the bathroom floor. So, we're very proactive as far as trying to influence different venues that have a large number of visitors to provide these facilities.
One of the things that we have seen change over the last 14 years has been movie theaters. It used to be that the person with a wheelchair would sit completely separately from family. More and more, we see inclusive seating, so now the family can sit together. He's just part of our group watching a movie like everybody else. That's something that we really enjoy. That's one of our favorite activities, and it really makes a big difference in his life and in ours.
Quote from Jean Andersen:
“I’m big on inclusion. The ADA has helped make our community more accessible and inclusive to our son Sam. One of our favorite activities is going to the movies. Before the ADA, Sam had to sit separately from our family. He’s one of seven children. Now, with accessible and inclusive seating, we can sit together as a family, just like everyone else.”
Celebrating the 30th Anniversary of the ADA