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Programs for Children with Disabilities and Special Needs

Sunday, June 29, 2008

E and I continue to discover state, federal and private programs to help us care for Caroline. We recently discovered Nevada P.E.P. ("Parents Educating Parents"), a parent training and information center for parents of children with disabilities and behavioral issues. The office in Las Vegas is rather large and has several parents that work there that have children of their own with special needs. These parents can really relate to what we are going through and many are experts in a wide-range of disabilities ranging from severe autism to adhd. I wish we would have started with Nevada P.E.P. because they have all the information on other state, federal and private programs that we have slowly found on our own. They also have a library devoted to books and videos for parents with children with special needs. I cannot say enough about this place. If you have a child with a disability or a behavioral issue or would like to know more about children with disabilities you should check it out. I am told that there are P.E.P. offices in every state, so if you do not live in Nevada you can still check this out.

Other programs I would recommend looking into if you have a child with special needs are: Desert Regional Center ("DRC") and Nevada Early Intervention Services "NEIS". I am told that these programs exist in other states as well. DRC is similar to Nevada P.E.P. but also offers respite services. NEIS is for children under 3 years old and offers physical, occupational, speech and audio therapists that will come directly to your home. While they do not come as much as we would like, it's nice for E not to have to drive to an appointment now and then.

Finally, to cover all of the things not covered by your primary insurance, even all the co-pays, deductibles, respite care and over-the-counter medicines associated with caring for a child with special needs, (which can add up very very quickly), I would suggest looking into the Katie Beckett option here and here. It is also somtimes called the TEFRA option. I am told that only a handful of states have this option. Nevada has it and I have confirmed that Idaho has it. I am pretty sure that California and Utah do not have it. If you aren't sure if your state has it or not, it is definitely worth checking into. Also, even states without it sometimes have a similar version of it (I am told that Arizona has a similar, but not identical version). The Katie Beckett option does not look at parents' income, so even if you do not think you would qualify, you should check it out. Keep in mind, however, that Katie Beckett will never reimburse you for things you already may have paid for out of pocket.

There are a lot of programs out there for children with special needs. However, we have found that many of these programs will not present themselves to you, rather, you have to search for them. For many of the programs, you also have to be an advocate for your child and push for the things you want. I often hear excuses, particularly from NEIS, like "we don't have money for that" or "we are stretched too thin." Keep in mind, that that is not your problem, it's their problem. If you need help advocating for additional services, Nevada P.E.P. has case managers that will assist you and even come to your house for appointments and evaluations with NEIS (or Individual Education Programs "I.E.P." after your child turns three years old).

I hope this has been helpful to you. I wish we had had this information from the beginning, as many of these programs do not come up in simple internet searches. I am sure there are many other programs out there that we are still not aware of yet. If you know of one that I have not mentioned here, feel free to post a comment. We would love to hear about it.

2 comments:

  1. Bryce, how nice of you to take the time to share all this helpful information. It is very enlightening and I'm sure of real benefit to many. Thank you. We sure look forward to seeing you, Erika and Caroline at the Sanofsky Family Reunion. Love, Aunt Kris

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  2. You have helped us so much with the information you have posted! Our son is almost 6, and we will be transitioning from a great, loving community. Do you have any advice about schools?

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