Cover of NY Newsday with my daughter on it!I don't know how durable medical equipment is in other areas, but here in New York, things used to be managable. My daughter is on a special program, Care At Home, through New York State and it is an amazing program. I don't know how I would be able to take care of her if it weren't for the program. I truly thank our State for realizing the importance of such a program for medically fragile children. Does your state have a program like that? If it doesn't, you should advocate to get one. The idea of the program is to keep children out of institutions and at home with parents. The program helps with nursing, therapies, home modifications etc.
Unfortunately, our medical insurance no longer includes durable medical equipment. So, we had to go to Medicaid as the primary and well what a disaster that was. New York closed an office and it ws nearly impossible to get equipment authorized. People couldn't get wheelchairs and other equipment they desperately needed. It is truly pathetic.
Now one thing you will find out about me is that nothing makes me more crazy than people trying to take advantage of the less fortunate. If you are going to try to make budgets meet, don't go after those with disabilities. So, that's where I started my mission. I started to fight for those with disabilities to get approvals for durable medical equipment. It broke my heart to see one man whose communication device was broken and he was unable to get it fixed so he couldn't communicate. Another woman whose chair was broken and she kept falling down because she had to try and walk with a walker. To me that is inhumane. Whether I had a daughter with a disability or not, I would be fighing. Actually, I might even fight louder if I didn't have a daughter who was directly effected.
SO now my point on why advocating is so important. My daughter can't talk for herself so she relies on me to do the talking. I made a pretty strong impression, her picture was on the cover of the NY Newsday (LI Edition), I testified at a 5 year Comprehensive Plan for NYS, I even testified at the NYS Assembly Congressional Investigative Committee looking into this matter. It took all this to finally get her chair approved. However, my heart aches for those who do not have someone to advocate for them in life. I visit the local UCP residential home and these people do not have anyone to come and visit them. They get so excited when I come. My husband thinks it is depressing (as do most of my friends) and it is...I cry. But I feel so good after I leave there that I went and spent time with them.
So, its important to advocate, network and help anyone else you can with whatever energy you may have left. Trust me, you will feel amazing afterwards. I know I do!
4 comments:
Well put Lisa! Advocating for someone or for oneself seems to have become a lost art. I don't know if people have become conditioned to the existing assistive technology funding environment or have just given up. Regardless, your energy and passion is inspiring. Keep up the good work.
Good for you! I hope there is someone who will advocate strongly for my son when I am gone. The churches need to come in and put their voices behind these issues.
Thanks everyone! I really try and I urge other parents to do so as well. I find that most parents are overwhelmed with their day and don't even know where to start to advocate for their children so they do give up.
And Juliana, I so agree. I am a big believer that we need to go back to the community and work together to help those who need help. We're all so wrapped up in life, we forget to just peak over at our neighbor to see how they are doing.
Bless you! I am working with an internet friend who has the drive to make his life work but there doesn't seem to be much in his state to help him, so we are trying to get his own business going, which will require special equipment. TY for sharing this is truly inspirational! Remember people are cheering you on and fighting with you! :D Sends many HUGS! :D
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