I hope the word “inclusion” becomes unnecessary, because we all simply live together.
Just a few days ago, I was sitting at my desk across from a woman named Amanda. Amanda is 36 years old, and very put-together. She is a certified financial planner, and worked full-time until she had her second child. Her oldest is 4, and was diagnosed with autism at age 3. Her youngest, who was born just over a year ago, has Down syndrome.
Amanda told me that she was feeling overwhelmed because she didn’t know what supports and programs where out there and potentially available to her children. She said that when her second child was born, she was surprised to find that the hospital didn’t connect her with resources or send her home with more information about life planning for children with Down syndrome. Most people want an instruction manual when they come home from the hospital after having a child, but in her case, she felt it was especially important. What life-planning issues did she need to think about? What legal issues would she need to address? Were there any specific government benefits or programs that would help with care so that she could work full-time again? What about all this talk about Medicaid being cut down? She was equally unaware of groups that could help her learn more about raising a child with autism. She felt lost, like a person floating out on a raft in the middle of the ocean, with no land in sight, and no real knowledge of how to swim.
I realized, while she was talking, that Amanda wasn’t yet “plugged in” to the local community of people living with disabilities, because her children are still so young. Until children are old enough to go to school, parents get most of their information about what to do for their kids from pediatricians, or from other family members. That works well if your pediatrician or your brother knows about The Arc of Greensboro, or the Autism Society, and is able to help you make a connection. But based on my conversations with many parents, most feel lost until their children are much older and they happen to stumble upon someone with some knowledge of the local resources.
With our current political climate being what it is, many people are growing increasingly worried about the future. Almost daily, those who are “plugged in” learn of the dismantling or proposed defunding of government-based supports for people with disabilities. Programs like Medicaid, which provides basic medical assistance for many, are currently on the chopping block. For those people with more significant medical needs and their families, this program is invaluable. The proposed cuts to Medicaid would result in a loss of services to many, and would cap what Medicaid would be willing to pay on behalf of each person enrolled in the program. But most people who don’t have a child or sibling with a disability don’t know that.
Many of us are living with the fear that there is nothing we can do about the proposed and looming changes, but of course, that’s not true. Simply being aware, and making others aware, of the problems is crucial to moving things in a different direction. Like any other community or group, people with disabilities tend to stick together. That’s good in a lot of ways, but the other side of that is that we tend to stick to ourselves. We should share our stories, our struggles, with people with and without disabilities in our community. Getting our friends together to talk about the issues that worry us, even if it’s just once a month, raises awareness among the general public and keeps everyone focused on the problems that need fixing. Some who don’t have a close family member with a disability are simply unaware of these issues, but would work hard to create more resources and supports after becoming conscious of the problems.
I hope that 2017 will be the year in which the “mainstream” and the “disability” communities merge, allowing for a better flow and exchange of ideas between people. I hope that people like Amanda don’t have to panic when their child is diagnosed with autism, because they already know what to do, they already have connections with people that can help guide them through the issues that may arise. I hope that those who aren’t personally affected by a disability will continue to take up the torches of those who are. I hope people with and without disabilities will advocate for thoughtful living, and design. I hope the word “inclusion” becomes unnecessary because we all simply live together, considerate of each other’s needs.
Kristy S. Andraos, Esq.
Elder Law, Special Needs Trusts and Planning, Guardianship
Andraos Law, PLLC
330 S. Greene Street, Suite 12B
Greensboro, NC 27401