Subject: Re: Resources

I do get stressed out more frequently than I like, and also I'm very concerned about Katie's brother Matt being cheated of some of the attention he deserves and needs. We are lucky in that KT's summer program runs a full six weeks and also our community has a summer day camp program for all the other kids so Matt can connect even more with his schoolmates. He also goes to his Dad's in Arizona for (usu.) the month of August. It's just that with KT getting older and larger, the physical demands are just about at my limit. I can't take them to the beaches even though we're only a quarter mile away because I don't feel confident in my ability to keep KT safe there and Matt's not allowed to go without an adult. Probably a big part of how I feel right now is that she's not in school and fairly bored at home which makes her behavior uncooperative--she really seems to need the VERY structured environment provided in school, probably also the much higher level of stimulation and involvement in activities. I find it hard to provide this at home and also run the household. Thanks to everyone for listening, any suggestions are welcome! Deanna

Subject: resource list

Bill, Yesterday I recieved a pamphlet in the mail, it was from the Federation For Children With Special Needs. In the pamphlet is a long list of local, state,and federal resources. I'm not sure if any of them will help you, but I'll make a copy of it and send it to you. I'll stick it in the newsletter that should be going out next week(I hope). Laura

Subject: Re: resource list

Laura,

Is there an addres where we might be able to write and get a copy of this pamphlet? Thanks, Terry (Matthew - age 7)

Subject: Re: resource list

Terry, The one I have is for MA. but the Address is

Federation For Children With Special Needs 95 Berkeley Street, Suite 104 Boston, Massachusetts 02116 (617)482-2915 www.fcsn.org E-Mail: kidinfo@fcsn.org

Maybe NJ. has something simular.I could either fax this one to you,or also put one in your news letter. Laura (Alyson 6)

Subject: Re: resource list

Laura, would you mind posting where we could obtain that pamphlet?

Thanks! Deanna

Subject: Re: resource list

In a message dated 96-10-02 13:56:30 EDT, you write:

<< Maybe NJ. has something simular.I could either fax this one to you,or also put one in your news letter. >>

Laura,

Any and all for of help are very appreciated!

Thanks, Deanna

Subject: Re: resource list

Deanne, I got the resource list in the mail. When Alyson was getting ready to go into public school, the Federation For Children With Special Needs came into Early Intervention to help parents understand IEP's. I am now on their mailing list and get occasional newsletters , and things like this resource guide. Inside the pamphlet are 1)Massachuetts Government Recources 2) Specific Disability Organizations 3) Federal Resources. I would be more than happy to send you one. Do you recieve our Upper NorthEast Newsletter? I didn't see your name on the list, and I don't think I know your daughter's name.If you would like the resource pamphlet or our newsletter just send me your address(privately if you would like). If you already recieve the newsletter under your daughters name just let me know and I will stick one in her newsletter. Thank You Laura Good(Alyson 6)

Subject: services

Hi all. I have seen there has been a few people wondering about available services and such. The best i could find at this time is the states "if the info is current" that have joined tefra-----> tax equity & fiscal responsibilites act. Katie beckett programs or similair with a differnt name where incomes are not an issue of the parents. Like i said please dont "quote" me because im not sure how up todate the joined states are. Arkansa,Connecticut,Georgia,Idahoe,Louisiana,Massacheusetts,Michigan,Minne sota,Nevada,New Hampshire,Rhode island, South Carolina,Vermont,West Virgina,Wisconsin, Hope that helps some out. I have gathered contact people and phone numbers also in html's and would be glad to attach the .exe files to anyone that e-mails me direct wanting the info. ttyl paul <maggie>

Subject: Re: services

Hi! I'm not EXACTLY sure how it works, but the doctor has to make a script out for diapers and include the childs weight. There is a form to fill out (call social services). Then, you go to the drugstore and they have them there for you. Insurance might foot the bill also, it depends on who you are with. This all takes a while. But if your child is over 5, you CAN get the diapers for free.

Jill

Subject: Medicaid waiver

Bill,

We also live in Massachusetts, and we also got rejected for Katy Becket. However, you do qualify for CommonHealth, which is basically a Medicaid card. If you have no insurance for your son, CommonHealth picks up the whole tab, but you can also pay into the program (on a sliding scale based on your income) for supplementary insurance.

CommonHealth picks up where other insurance stops. It covers things like diapers, various equipment, home health care, etc. I highly recommend it.

Regards,

Jeanne, mom to Ben, AS, 9

Subject: Re: Medicaid waiver program

Hi Bill I live in PA and our son Daniel, age 3 Del -, was accepted in the program through the loop hole. I remember having to write "loop hole" in red ink on the application, along with the proper code for children with disabilities.

Right now we use the card for diapers. PA allows you five free packages of diapers a month once your child reaches age 3. Our therapies in Daniels preschool are also billed through the program.

The only problem we have is finding out what other services we are entitled to. The case workers are terribly misinformed and they do not care to find out for you. I learned about the diapers through networking.

Nancy

Subject: Re: Medicaid waiver program

Is there anyone in the list from NJ who knows what, if anything is available in NJ through the Katy Beckett program? Deanna

Subject: SSI

We get a monthly SSI payment for Schayne. It took us almost one year and a lot of fighting to accomplish this, though. Even though I provided our local office with copies of all doctor records since birth, including copies of genetic testing with AS diagnosis, we were still sent to "their" psychiatrist to evaluate him. I guess it was worth it, though. Now I am able to stay home and take care of Schayne(dr.'s appointments, therapies, etc.), and not to mention that even though we are using melatonin (OTC) he still does not sleep all night. If we cam be of any help, just ask.

Michelle and Ken Martin (Schayne 3 del+ and Bryant 4mos.)

Subject: Katie Beckett

I called SSI in Washington State today. They've never heard of "Katie Beckett" before.

Please, can anyone tell me about this program. Is it an SSI program or a Medicaid program. How do I ask about it?????? Qualify for it????? etc.

Thanks a million.

Janis Seattle Katie (13)

Subject: Re: Katie Beckett

J wrote:

> > I called SSI in Washington State today. They've never heard of "Katie > Beckett" before. > > Please, can anyone tell me about this program. Is it an SSI program or a > Medicaid program. How do I ask about it?????? Qualify for it????? etc. > > Thanks a million. > > Janis > Seattle > Katie (13)

Janis, I don't know what determines which states have it and which don't. President Reagan created it several years ago when a family had a child named Katie, who had humungous medical bills. They wanted to care for her at home, but couldn't afford it. The providers of services have to "certified" by the state. Your income is not an issue, but your child cannot have more that about $1800 in assets (not including trusts). The program covers medical costs of services over and above what your insurance covers. It is called "Medical Assistance for Children with Disabilities". Janice Daley (Jennie 16+)

Subject: KATIE BECKETT

> program covers medical costs of services over and above what your > insurance covers. It is called "Medical Assistance for Children with > Disabilities".

Its a Medicaid income waiver and should be accessible through departments of Social Services. See if you have a chapter of Family Voices in your area, as they will know.

Here (in Colorado) it's been reissued with an additional 200 slots and has a new name. Model 200 it's called in some states.

Here you have to apply for Medicaid and be denied before you are allowed to apply for the waiver...you can waive income but NOT ASSETS!

Kathy (Stephanie 6, Del- UPD-) --- þ SPEED 1.40 #1678 þ

Subject: Re: Jamie's MHMR caseworker/ NJ Resources

Hi Beverly, Glad to hear that you're finally getting some help! Inspired by what I said to you, I did some more searching of my own in NJ for any help that might be available for Katie A. What I found is: Special Child Health Services. It is a clearing house of services and referrels. We slipped through the cracks for two reasons: 1. Katie had no apparent abnormalities at birth. Evidently, all obvious birth defects are reported to the state and then followed by SCHS. 2. When Katie was diagnosed, it was in Penna. at Children's Hospital of Philadelphia, not in our home state of NJ. Again, not reported. >From what the caseworker told me, the Katie Beckett issues are addressed by Medicaid in what is called a "Split Application". This Medicaid will pay for things not covered by our health care insurance, must be first turned down by them, and can only be obtained through designated Medicaid Providers. Other programs that are available are these: Emergency expense moneys available through a foundation. Stipends available for home adaptations. A summer camp program. Possibility of meds being paid for by the Epilepsy Foundation. None of these are income based eligible. So, I must THANK YOU!, because you gave me the incentive to make another search for services for Katie. Now, I guess, all I have to do is the (ton of) paperwork. Thanks again, Deanna