Need a Advocate!

Elizabeth - posted on 07/29/2010 ( 7 moms have responded )

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Well the news on Mariha to day is that we may be loosing her Nurse!
I can not believe that! I guess that since now the medicaid is going to be paying for her In home care, (which she only gets for 2 hours a day 4 days a week, which in my opinion is nothing!, but at least it gives me time to go food shopping, or clean, or cook, or just go have a cup of coffee with a friend.

So I will be connecting with a social worker, and try to get some kind of help in keeping her services, they want to change her from in home care which services, a bath, and a feeding.. wow! to just respite which consist of just some one to sit with her... now why do I need some one in my home to sit with her, she is not lonely!

She is obviously in need of these services, I don't have any Idea why we have to jump through hoops of flames just to get the little bit of help, that we do get.

So today I will be bringing her to her pediatrician and get all kinds of prescriptions for her, to cover all kinds of things, (just in case) ONE of them saying it is mandatory for her to have a nurse for these 2 hours a day 4 days a week...

7 Comments

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Tammy - posted on 08/01/2010

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Has anyone gone to the colleges and tried to apply for an intern to help with your child. I hired a wonderful young lady from the Longhorn Newspaper TCU, she was working towards her teaching degree in SPED. She needed experience and a letter of recommmendation, she did this for peanuts. I did a background check on her, called references and a dinner interview in my home to see how my child and family would respond to her and she walked in like part of the family. We are still friends today and looking forward to being able to help her with her new baby.

Renee - posted on 08/01/2010

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Call your states protection and advocacy office.They have atty's on staff and can hhook you up with an advocate.also try your state's council on developmental disabilities.Center's for independent living have advocates as well.What state are you in?all of those can be found on the web.

[deleted account]

in most states, once children turn certain ages (3 for example) they are reevaluated to see if they qualify for waivers to provide more intensive services. some of these waivers are only for children who need line-of-sight supervision or serious medical conditions. You don't say what diagnoses your daughter has that entitled her to receive services up to this point. every state has different rules for applying Medicaid funds for such services. You can find contact info on the appropriate people for your state at www.nichcy.org , click on state resources and look for your state developmental disabilities agency and also under Organizations for Parents, find your state Parent Training and Information organization - a federally mandated agency in every state that can answer all those questions.
take care.

Virginia - posted on 07/30/2010

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The respite care around here is supposed to work like this-
You get roughly 30 hours a month of care, which is only for the disabled child, no siblings, and cannot be used while you go to work. The child must not be sick with any contagious illiness and you must plan your outings at least a week in advance and contact the service provider.

That said, when I was signed up for this, they never had enough funding to send anyone to me, I live 45 minutes from the only respite program office, and they couldn't afford to send anyone to me. So I got screwed. The only time I have away from my kids are while I'm at work, and the only person who will watch them is my fiance', my own family refuses to help.

Katy - posted on 07/30/2010

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Respite care is not just for someone to sit with your child. These are hours you can use however you want with a waiver form. Respite is for you to have time to get out of the house and do what you need to. In my case, we having regular nursing through his Medicaid PA which covers nursing hours while my husband and I are at work. Waiver supplies the respite, which we can use however. We get 40 - 50 hours per month. With respite, nurse are required to do more than just sit with your child. They are suppose to anything from bathing to eating or even doing the childs laundry.
Hope this helps shed some light for you.

Jane - posted on 07/30/2010

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Call your County Nursing Service - they may be able to reassess her needs. It's all based on what you tell them about how much time it takes to help her with her Activities of Daily Living, and how much help she needs with them.

Also, check the DD caseworker at Social Services, and get the info on the waiver options. You will be able to get what's called a "Family Support Grant", and PCA (not nurse, but Personal Care Attendant) for your daughter. I have one now, and my boy actually qualified for 10 hours a day!

Give it a go, and keep me posted.

We're all in this together,
Jane http://meetchallenge.blogspot.com

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