More "trip" insurance (Medicaid waivers)

We've talked about CSHCS in previous posts. There's another program many families fail to apply for: Indiana's Medicaid waivers. It is our equivalent of the Katie Beckett waiver. It allows children and adults who would be eligible for a nursing home or institution to waive the right to that placement, but to request that those service be used in the home and community. It also waives the income of the family so a child under 18 can get Medicaid even if the family is over income for other types of Medicaid. If your family has income based Medicaid, you should still apply for a waiver because it provides additional services not covered by traditional Medicaid (respite, home modifications, supported employment, etc); and if you can't get Medicaid because you're over income, it will allow your child with a disability to get Medicaid and waiver services if eligible.

I'll use my experience to help explain this:
My baby was in the hospital for months because she had a trach and a gtube and was on a ventilator. The only way I could safely bring her home was to ensure I could meet her medical needs at home. We had private insurance and CSHC, but there were still co-pays and services those programs wouldn't cover. The Aged and Disabled waiver allowed us to get Medicaid for our baby. It meant we could have nursing care in our home. It meant we could get WIC to pay for her formula. And, as she got older, it paid for diapers, Pediasure, a ramp for our home and other things we needed to care for and support her.
How does this work?
We chose to keep private insurance for our child so that was billed first (you CAN elect to drop your child from private insurance when you have Medicaid, but you need to consider that it will limit your choices for doctors and services). Next, if there was a copay or a denial, the bill went to Medicaid. If they paid it, it stopped there. If they denied it, like respite, it was sent on to the waiver unit. If it was a waiver service, it was paid for. If there was still an item all of those wouldn't pay for, like mileage reimbursement to take her to appointments at Riley, then we billed CSHC. She had as many layers of coverage as we could acquire for her. It saved us from financial strain and gave her the supports she needed to thrive.

Many families actually get the consumer's guide and/or the application and don't apply. Many don't understand what they're signing up for. Many don't want to fill out an application that says "long term services" because they think their child will have to live in an institution. Many don't apply because the waiting list is so long. You need to get your questions answered and SIGN UP NOW!

To learn more about the program, you can find the consumer's guide here. It will list all of the services your child might qualify for. You can sign up for EVERY waiver you think you might be eligible for. There's a waiver fact sheet at The Arc. And, some schools have waiver sign up nights where you can get help filling out the application. If your district doesn't have these, ask your child's special education teacher to consider hosting one. Family advocates at The Arc can then present info on the waivers and help you complete the applications. They will do this on a 1:1 basis as well. Just call The Arc ( 800-382-9100 ) and ask for a family advocate to help you sign up and answer any questions you may have.

There is currently no waiting list for the medically based Aged and Disabled or TBI waivers. You can apply for those by calling your Area Agency on Aging and asking for a phone interview. If your loved one has a developmental disability, including autism, you can sign up for those waivers by sending an application to your local Bureau of Developmental Disabilities Services office. Keep a copy of the application for your own files. You will be asked to complete a DDP (disability determination profile) to be placed on the waiting list. Be sure to highlight your child's support needs in this interview. If you are placed on the waiting list, the current wait is 8-10 years long. While you are waiting, be sure to ask for the caregiver support respite hours that are available. It's a good idea to call every year and check on the application's status and ensure they have the correct contact information for you.

In the meantime, contact your legislator and share your struggles to care for your child. Urge them to END THE WAITING LIST!