State Help???

Traci - posted on 08/26/2009 ( 14 moms have responded )

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My son has been diagnosed with cerebral palsy and I have been told by many people that I should be able to receive help from the state via a medical card, disability, etc. I have tried to contact some people with the state and they have no idea what I'm talking about. Is there anybody out there that might know of what I'm talking about and if so can you give me an avenue to start. It is so overwhelming at first and I can't get it off of my mind...Thanks Traci I live in Kansas

14 Comments

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Mgreen73 - posted on 04/29/2014

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was wondering if anyone could help me. I am an American that has been living in Australia for the past 11 years. I have two sons ages 11 and 15 both with mild intellectual disability and the oldest with Asperges. Both their IQs are just below 70. The youngest goes to a specialist school. Here in Australia due to the diagnosis of my children, I am a full time carer. The government pays me as much as I would get if I were to have a full time job. So basically I live very comfortably when compared to the US wages. I have been seeing someone online who lives in Oregon. My sister also lives there and I'm missing the States and have been thinking about moving back. My concern is, If I move back, what kind of income would my kids and I be eligible for back in the States. Could anyone tell how much money my kids could get or even if they are eligible for anything and would I even be able to be payed as a full time carer in the States? THANKS, Maria

Tanya - posted on 09/06/2012

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they are talkin about ssi and medicaid from social services and you need a service coordinater who should help you with somethings you need. I got a girl with severe cp and its severe as it gets , and I cant get hardly pampers for her at 11yrs old and drinks ensure and cant do any kind of movement.but ny is one of the best states for the disabled.

Bonnie - posted on 09/01/2009

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I have a son also who has cerebral palsy and is deaf. He is now 24. But I remember how overwhelming it was in those first few years. Hang in there you will beecome his strongest voice and advocate! You can apply for federal help through your local Social Security office. He may be eligible for SSI disability. They have some limits on income and such but apply anyway. The medical card will come from them if he is approved. And if they deny him. Don't be shocked. They actually denied my son(even though it is a permanent disability) then I just appealed and then was approved. I had no legal help in this process. Just follow the instructions and get the required forms. They will guide you. (Check out www.socialsecurity.gov )Also you can check with your local mental health facility and see if they offer any services at all for disabled children? My son received help through our local mental health facility. Check non-profit organizations as well like Easter Seals or sometimes it is under other names like Stepping Stones and online check out www.upc.org. United Cerebral palsy can give you lots of information and resources. One more source may be your local phone book. Check the Human services and family services listing. Good luck!

Danielle - posted on 09/01/2009

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Hi Tracy- my daughter was also receiving SSI for a while and they recently sent a letter saying she'd no longer get payments. I looked over the figures they used to determine this and found that they seemed incredibly inaccurate. I'm obviously going to appeal their decision! I have a friend who's husband is in a wheelchair and she's been through the ringer with some of the "help" out there and told me, when my daughter was first diagnosed with her neurological disorder, to NEVER ACCEPT THE FIRST REJECTION!! We applied for SSI and were accepted the first time around, when I told my friend this, her jaw nearly hit the floor. She also works for the state and sees deserving cases go rejected all the time. She just could not believe that they accepted us the first time. She said usually, if a parent doesn't just accept the first rejection, it takes up to 5 appeals before they are granted the help they so badly need! So whatever option you choose, fight hard for it because not only will it be worth it, but you may just have to keep at it- keep asking 'Why?" and "Why not?" and "What other options are out there?" Eventually you'll get someone that is willing to help! Good luck!

Shelley - posted on 08/29/2009

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aid will depend on your State but contact the school district to see what they can tell you. Especially if your area has special schools for specific needs. We have not had good luck finding State aid in Indiana

Ashley - posted on 08/29/2009

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I live in KY and my son recieves a Medicaid Disability Waiver. Baisically it is a medical card that covers any expense that our primary insurance doesn't cover. i.e. co-pays, pediasure, special equiptment etc. It is for families with disabled children who do not qualify for SSI or state medicaid due to income levels being to high. There is NO income requirement for the waiver. You could contact you local family services office and specifically ask about a "waiver program" most states have them, but it seems that it isn't a very well known program.



Another place you could ask about it, is at your local home health agency. I think most states require you to recieve respite to get the waiver. Which is provided by home health, so they should be familiar with the program. When we got ours they actually did most of the paper work for you.



Good luck! It makes a huge difference.

Deanna - posted on 08/28/2009

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In Michigan, services are 0 to 26 years. Our first meeting with the intermediate school district regarding services included help navigating these issues. They were wonderful during a time when we weren't thinking all that clearly. Hope this helps!

[deleted account]

we recieve SSI (social security disability) for our 8 year old daughter who has Friedreichs ataxia and is losing the ability to walk and causes her to have heart problems, I was able to fill out the form online, if you go to socialsecurity.gov you can find your local SS office and they can give you the number to apply for state medicaid, they want ALOT of info from doctors, teachers, counslers, ect. the online form took me about an hour to fill out because they want exact dates and names and numbers of all the doctors and specialists, then someone called me a week later and I did a phone interview, then it went through the approval process, it took about 6 weeks to find out if we were approved, it goes by the parents income when they are under 18. hope this helps

Traci - posted on 08/27/2009

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Thank you for all of your input. I will start at some of the places mentioned and hopefully I will get some where. Good luck to all of you in the future!

Rhonda - posted on 08/27/2009

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You want to apply for Social Security Disability and SSI (Social Security Income/Insurance).

Melanie - posted on 08/27/2009

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Traci,

My daughter also has cp and our first step was the department of human services and ask for an application for the ill and handicap waiver then you should see a worker and they will help get you started with everything.Also,your doctor should be able to help you with referrals and such to get your son started with theraphy and things.At first it can be way overwhelming but it is well worth it my daughter was just diagnosised in June and we already are seeing some real good improvement.Just keep asking questions.If you ever need to talk or just someone to listen please meassage me I may not have a lot of the answers but I will help you find the answer.Good Luck to you and your family.

Sandra - posted on 08/26/2009

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How old is your son? I live in Colorado and the State Social Services dept is one place to start but there is also a division for Children with Disabilities. In our case, it is Envision Services. Another avenue is your school if he is school aged. Sometimes the daycare centers can help as well with referrals. Talk with your child's physician as well or the local hospital's patient advocate departments. (They are a wealth of referrals and information). Good luck. Working the system is sometimes a very difficult road. Just hang in there and keep making those contacts.

[deleted account]

In Louisiana you should just go the the most nearest SS office that is where it all starts. I have learned that once you open one door two doors open and you start feeling overwhelmed with all the info out there, I stayed silent for awhile because I had no clue where to start. For me it was the SS office and the Medicaid office. hope this helps GL

Maureen - posted on 08/26/2009

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Hi Traci,



I know how difficult it can be to navigate the state run systems! Here is some information that I hope will be helpful. I googled Kansas Medicaid and was able to find a site for the Kansas Medical Assistance Program. Their web address is kmap-state-ks.us. There is information about Kansas Medicaid benefits and how to sign up. There was also a number to call teh Healthwave Clearinghouse at 1-800-792-4884. Another way to go would be to contact your county Department of Human Services office. I live in Arkansas and would be happy to help with more specific information if I can. Or just listen if you need to talk. There are lots of hoops to jump through to get our kids the help they need. I wish I knew more about what Kansas offers, but hope this little bit does help you in some way. If you would like to e-mail me, just let me know and I will send it in a private message.



Maureen

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