Tuesday, May 6, 2014

Resources for Special Needs Children and their Families

When your child is diagnosed with a disability, or even before your child is diagnosed, it is very normal to feel lost and alone. Some pediatricians will give you great help, but most won't, because they don't even know all the resources available to parents. Now that I'm a little further along this journey, I thought it would be a good idea to list some resources that I think are essential in helping you along this path. Most of them should be available in your area.

1. Your child's pediatrician. This is an obvious one, but an important one. Don't be afraid to talk to your pediatrician about your concerns. They just might know where to send your child for more help. In the case of all three of my kids, our pediatrician has been the one who has listened over the years, and has never hesitated to give services that I want for them. If your pediatrician doesn't want to diagnose, but you know something is wrong, don't be afraid to insist on getting more help. You are the parent, you are the advocate.

2. Your local regional center.  This invaluable resource provides early start intervention programs and other therapies and services as your child grows. To find out how to contact your local regional center, go to google, type the name of your county + regional center + disabilities. This will most likely take you right to the page of your regional center. I cannot express enough how much the regional center will help you! They provide services in the home, free evaluations and assessments, respite care (babysitting/break time!) and help to guide you along your journey. And if you are denied services, DO NOT GIVE UP! Appeal, call, bug them, email them, pester them! I had to apply 4 times to get Julianna services. I will talk more about this in upcoming posts.

3. Your local school district. When your child turns 3, the school district is obligated to help your child. They will evaulate and assess, and then provide therapy or school programs. You will write an IEP (Individualized Education Plan) with a team of people who will be helping your child, and set goals that your child can reach each year. Now the school district won't always see things your way, but remember, you are the parent. You have the last say. If you don't agree with their plan, don't sign the IEP. Make sure you are ready to attend every IEP with your own goals in mind, and know your rights. It can be very intimidating to attend a meeting with professionals, some of which don't want to provide services because of the lack of funding. This is no excuse--make sure your child is receiving the appropriate services. Talk to teachers, other parents, and find out what those services are for your own child, and fight for them.

4. Medical or medicaid. Once your child has an official diagnosis, you can contact your local medi-cal or medicaid office and sign up for health coverage for free. Now you might be thinking, why would I do that? I already have health coverage for my child. Then make medical a secondary, because what is provides is free visits to any doctor or specialist, free prescriptions, basically free anything. It is not based on your income at all. You just need your doctor to sign a form that you can download from your local medicaid office's website, and fill out some paperwork. Totally worth it. And it's also the first step to getting this next service...

5. In-home support services. Medical or medicaid is the first step to securing IHSS, a government program that pays you to take care of your child, essentially. When your child gets behind in self-help skills, like dressing, eating, bathing, grooming, etc, you can him or her sign up for this program. Search for IHSS in your county and contact them; they will guide you through the entire process. Someone will come to evaluate your child and determine how many hours a month your child needs help, and then pay you per hour. You fill out time sheets and mail them in, and get the money directly deposited into your checking account. The pay is usually based on income--they have a share of cost. But if your child has regional center services, the regional center can fill out a waiver so there is no share of cost. All the more reason to get those regional center services! Julianna has had IHSS for almost 2 years (I wish I had heard about it sooner) and her hours are winding down. But to me this only means that she is catching up, so I am happy about that. Definitely worth the time and effort.

6. Free diapers and incontinence supplies. Now don't get all excited just yet, those of you with babies or toddlers! Your child can get free diapers through insurance delivered directly to your home as long as he or she is over the age of 5. Just ask your pediatrician about it. Unfortunately, Julianna was over the age of 5 and not potty trained, but I was so grateful to be getting high quality supplies delivered to my door for free until she did.

7. Non-profit advocacy groups. If you are having trouble getting services for your child, either in the school district or regional center, there are most likely free advocates that can help you. There were many times I really wish I could have hired a lawyer, but that was just not feasible. I was lucky enough to find great, educated, informed individuals who listened to my concerns and helped me get services. So talk to other parents in your area, or google to find out who might be available where you live.

These are just a few of the basic services that I use or have used. I will be going into more depth about the regional center and school district in my upcoming posts about Julianna, so stay tuned!

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