We all know that entering adulthood is very difficult for anyone. There are a lot more responsibilities to face and new challenges to handle. The parents also have to face that their teenager is not a kid anymore, but they are adults now. What about if your teenager has Cerebral Palsy or another disability, how do you prepare them and yourself to allow them to live independently with a disability?
Living at Home
I think that parents often think that their teenager will live at home until they can not handle the young adult anymore. This thinking seems logical, and besides young adults, who don't have a disability often stay at home until they graduate from college or even longer. So having your kid with a disability stay with you is not outrageous.
The parents have to prepare for the day when the individual needs to move out. They think that they can start planning near to the day and don't have to think about it until then. Is this a good approach to take? In my opinion, this is not a good idea because if something would to happen to you suddenly, there would be lot unknowns to deal with. So what do you do?
Apply for SSI
I have some things that you should start doing right away when your teenager is still in high school. It is to get them on Supplemental Security Income
also known as SSI. It is a monthly income for your teenager and the government gives it. You have to apply for it. You might be saying that they might work after they graduate from college. If that happens, the individual will have to stop getting SSI. To live independently with a disability, one needs money and this is one of the easy ways to receive money. This might not be enough money, so one might need to go to other agencies for help. I had a problem with SSI when I was at college. Three summers I had internships and I got paid. One summer I received more money than the government allowed people to earn, so I had to pay back the SSI. So remember this if you run into this situation.
Hire a PCA
Living at home is nice, but when the day comes and your daughter or son moves out, they have to be able to work with personal care assistants
(PCA's). This ability to work with strangers is not easy, so in my opinion, you should get aides soon as you can because when they have to move out, they will know how to deal with aides. If you need help with knowing how to hire personal assistants, I have an online course
that teaches you everything that you have to know when you are looking for an aide. A PCA is often necessary to live independently with a disability.
As a parent of a kid with a disability, you will have so many worries to handle. If you start doing things little by little, when the day comes when your daughter or son moves out, you will be able to "say yes, they are ready to start this new chapter of their lives.
Can't Live on One's Own
Let's talk about if your daughter or son is not capable of living on their own with aides, and you not able to help them anymore. What do you do? This question is hard to answer. My mom
died from Alzheimer's in 2011. We had to put her in a nursing home for six weeks because she had to get shots every day. A nursing home was where the insurance approved to pay for the shot. I saw how nursing homes are, and they are not a place where I will ever step in ever again. I know of a couple, who has two boys who have a rare disability. They have to have around the clock nurses coming in and helping them. The cost of the help is millions every year. I know that the help might be really costly.
You as a parent might require extra care for your daughter or son. It is not easy to find, but you have to do what you have to. Sometimes it might be a good idea to ask other family members to step in and help. By doing this, you are doing two things. First, you are accepting that you need help. Second, you are allowing your family members to see what is truly going on. In case of something happens to you, they will have some understanding of what to do. I am not saying that they will know everything.
Opening a new chapter in your daughter or son is exciting, but you have to prepare for it. Preparing for this wonderful day, please don't take it lightly. If all of you put in the work to make it a success, it will happen. When I moved out on my own, there were a lot of struggles that I faced, although I prepared to the best of my ability. You will have your own struggles, but when you overcome them, you will feel proud of yourself. Don't forget that either. I believe living independently with a disability is my greatest accomplishment.