Welcome to the Dubowitz Syndrome Support Network
Children with special healthcare needs often qualify for the Medicaid/Katie Beckett waiver which is designed to look at only the child's disability & income, and does not take any other monies into consideration. The Katie Beckett waiver pays for services that commercial healthcare normally wouldn't cover. Included also is the EPSDT program which, in conjunction with the Medicaid program, will usually pay for equipment (wheelchairs, FM systems, augmentative communications devices), co-pays for rehab services, doctor visits, prescriptions, and if it's not covered at all by your insurance or the child doesn't have other insurance, it pays for it all. EPSDT also pays for diapers if your child is over the age of 3. In some states, if you have no insurance and your child qualifies for Medicaid, they will include the entire family. Make sure you have all the documents before you go for your appointment. If you get turned down, ask to appeal it and gather up your information. Don't be afraid to go back again and ask. Katie Beckett also pays for respite (qualified babysitting) and home based therapy services (which can include behavioural and social therapies). Programs vary from state to state with some states having a limit on how many children are accepted and some states not even referring to it as Katie Beckett, just 'the waiver program' or the TEFRA option. Call your state department of Health and Human Services and ask about Medicaid for your child with special healthcare needs for more information. No matter what your situation is, your child needs access to good medical care. Hospitals always make arrangements for people who cannot pay, or can pay very little. Don't deny your child a medical visit simply for this reason.
If you child is eligible for the Katie Beckett program, chances are she/he will also be able to get WIC. WIC is generally geared towards low income families, but as with the Katie Beckett program, it waives this for families with children with special healthcare needs. WIC covers the child up until the age of 5 and will pay for formula (depending on the brand, not necessarily all of it, but if your child needs some very expensive hypoallergenic stuff, it's well worth it), cheese, milk, cereal, and sometimes fruits and vegetables in the summer months. WIC is not the easiest program to get on and you may be turned down initially, but call your state director and explain that your child is on Medicaid or the Katie Beckett waiver (one in the same, depends on the state).
If you are low income, your child may also qualify for Supplemental Social Security benefits. This entitles the child to a monthly check. You need to keep careful track of your income because if it changes and you don't notify the SSA, they will ask for funds back if you've exceeded the limit. Once again, make sure you have all the necessary papers before you go to your appointment, it makes it so much easier. This program is based on the family's entire income level.
When all else has failed and you need something for your child that is not covered, you can find local charitable organizations a huge help. Groups like the Lions, and Shriners all do wonderful things for children. Shriner's hospitals give free care and equipment to children who cannot afford it, with an interest in children with hearing issues, burns, and physical disabilities. They say that the Shriner's hospitals don't even have a billing department! Even United Cerebral Palsy occasionally has small grants to help families with anything from summer camp, therapeutic horseback riding, to lodging for a medical visit far away. You can find local charities in your yellow pages.
Depending on the state you live in, at some point, your 'adult' child will need to transition into adult services. At age 18, you should at least be checking into what your state offers under the Long Term Care Waivers and apply for Social Security. Social Security is income based. You may have to jump through some hoops, but in the end, your young adult should be able to continue in the Medicaid program, and if was not already getting SSI because the family income was too high, be eligible for a check on their own. As the parent/guardian, you go to your local SSA office and do most of the paperwork including releases. It should not take long for you to find out. You also need to become/set up a rep payee account with the bank. SSA deposits the money directly each month. Since your child cannot ever have more than ~$2000 in the bank, you should arrange to have it automatically withdrawn into yet another account so it doens't build up. If the person has an income from working, you'll need to call in or fax the pay stubs to them each month so they can determine if you are still within the income bracket. If they go over, it reduces the check amount. If you neglect to do this, they can discontinue the checks, as well as their Medicaid, and you'll have to file again, but not for 6 months, or they can make you pay back any money over the limit.
When you call and get an appointment to go, you have to bring a lot of items with you. Make sure you can get your hands on them before you go. They can include: a recent IEP,l medical records, though there is a form that your child's doctor will have to fill out, any pay receipts, what it costs for you to live in your home and your child's fair share of that (depends on how many people live at home and what your bills are). They may also request their own eval. I was asked to bring my daughter to a psychologist to administer an IQ test (which she had had recently, and turns out by the same person!). They may also request that you bring your child in for them to meet and make a determination. We were not able as she was in school and they didn't ask again. They may begin checks within the month. After you get the first check/award letter, if it is not the maximum amount (you can check online, it varies by state), you can go in an appeal the award, bring in all your bills (electricity, gas, food, taxes, etc.) and they will go up to the maximum amount.
Long Term Care services and SSI are different agencies within your state. SSI is a federal program, LTC is usually state run/funded and the criteria is different. Neither one is strength based (unlike schools) and you need to focus on what your child CANNOT do, not what they can.
Depending on where you live, you should also look into setting up various Powers of Attorney (Healhcare, Financial, etc) or Guardianship. Guardianships have fallen out of fashion the past few years as disability advocacy organizations feel that they take away the person's civil rights. You can call to speak to your local Disability Law Center and they can do these free of charge (just need to be notarized). Be sure to have the documents accessible to you as they may be needed if the person is hospitalized or if you need to do some banking on their behalf.
If you have any issues along the way, all states should have a Disability Law Center that will help your child (not YOU) for free. Use Google to find yours as I could not find a comprehensive list for the U.S..
You child is also eligible to vote and your local Disabiltiy Law Center will encourage you to get them registered.
Adult services differ from State to State and can range from day programs, to internships, to group homes. Your child is awarded 'money' based on a determined level. You can then 'shop' various agencies with this money for the best programs to fit your child's needs. In some States, you can also choose to do self directed funding where an agency administers the 'money' to services that you contract yourself (such as staff). The 'money' is not real in the sense that you can get a check and decide what to do with it (like Social Security), rather it's directly sent to the providers/agencies to pay for particular services.
No matter what your child qualifies for as a child, it changes as an adult. Yes it is the SAME Medicaid as before, but the criteria is different to determine adult funding levels. In my state, it heavily favors people with physcial disabilities and the overall process can take YEARS (I applied at age 18, 2.5 years ago and have all the releases and paperwork in and they still haven't done anything, even though the rules require them to contact me after 30 days, yes 30 days!) Services do not start (here) until age 21, but all this needs to be in place well before age 21 to allow for plan writing and shopping around. Since school ends at age 21 (here) many young people are sitting at home for months because families did not start the process soon enough to get all this done in time. Even if all this is in place, some providers are refusing new clients because the State reimbursement rate is so low for the services. Once again, you can contact your local Disability Law Center to help you though this process or to appeal any decisions made. Your local Parent Training and Information Center for help.