What’s this I hear about a waiver?
How to navigate Indiana’s Medicaid Waiver Program
So you have heard someone talk about this Waiver thing, but not really sure what it is? They probably asked, “have you applied?” or maybe they told you “you need to apply.” Let me ask you, do you know what it is? Do you know what it does? Do you know how it can benefit your child and your family? If the answer is no to any of these questions, KEEP READING!
While there is a lot of information about Indiana’s Medicaid Waiver, it can be overwhelming for parents and caregivers. You can check out our FAQ page as well as getting info here and on the Arc of Indiana page.
WHAT IS THE INDIANA MEDICAID WAIVER?
In Indiana, the Indiana Medicaid Waiver is organized and coordinated through Family and Social Services Administration (FSSA). Initially, the Waiver was designed to support individuals with disabilities in long term facilities-like group homes. Now, the Waiver is designed to provide community based supports for individuals with developmental and intellectual disabilities. There are TWO Waivers - the Family Support Waiver (FSW) and the Community Integration and Habilitation Waiver (CIH).
So why have you just heard a little about this? What we are finding is that the medical profession typically doesn’t know about this. So don’t expect your doctor to be able to give you information. If you participated in a program like First Steps in Bartholomew County, they usually will talk you through it. If you go to a school, the school Special Education Teacher will be able to assist. If you still don’t get the information you need, contact US and we can help. In a nutshell - the waiver will PAY for your supports that fall under each of these waivers. Like what, you ask?….
WHY DO I NEED IT?
The Waiver is designed to support individuals that are living within their community (not a facility) to support their goals of improving their independence and functional levels. You may say, “I don’t need any of this yet, my child is only 5 years old.” As a parent who said the SAME words, I can guarantee, YOU WILL WANT IT! You will utilize different services at different points of their life. Some services are listed below (but this is NOT an exhaustive list)
Day services for adults- not a residential program, but a place for adults during the day to receive individualized services in self-care, rehab, therapy, health, recreation, and personal care.
Behavioral Supports - for individuals who may need extra help in managing behaviors and emotions
Community-based services - services outside the home to help support growth and development in daily living skills
Facility-based services - services outside the home, but in a facility to help support growth and development in daily living skills
Various therapies (music, occupational, physical, etc.)
Respite - support for caregivers outside of the work day to provide temporary relief to caregivers
Transportation
Workplace assistance
Family and Caregiver training
HOW DO I GET IT?
I’d like to tell you that it is a simple process, but it’s not. No sugar coating it at all. Applying for the waiver is complex with lots of steps and waiting in between. It requires the caregiver to gather a lot of documentation, go to meetings, answer questions, get doctor’s notes, and so much more. BUT I PROMISE IT IS WORTH IT! Not only will your child receive funding for the services up above, but he/she will also receive Medicaid health coverage. (even if you have other insurance). Here is the gist - but remember, if you need help, just ask!
Apply! - contact your local Bureau of Development Disabilities Services (BDDS) office. (pronounced the “BEEDS” office - if you hear that term) You can find information here. They will send you an application packet to complete. This is where you will get ALL the info about the documentation needed. This will take you some time and energy - BUT IT IS WORTH IT!
Once you turn in all the paperwork and documents, someone from the BDDS office will contact you to do an intake and conduct a preliminary Level of Care (LOC) assessment. This is usually where they get a sense of what your child can and cannot do. This is the step that determines eligibility.
Once you are determined eligible, you will be placed on a waitlist. You can determine your length of wait time by visiting the Waitlist Portal. When I did this for my daughter, the waitlist was about 14 years. Luckily, the waitlist is much shorter - anywhere from 6-12 months. There are things you can still do while you wait - like apply for Medicaid or Supplemental Security Insurance (SSI). Make sure to ask your Intake Specialist about this. If you are denied, talk to your Intake Specialist about the appeals process. Unfortunately, some families have had to do this, but it paid off and they were eventually approved.
NOW PAY ATTENTION HERE - if you move, you MUST call the BDDS office and update your address. They communicate via mail and if they don’t have a valid address for you, you go back to the bottom of the list. Once you are approved, they will mail you a notification letter. Once you receive that letter, you are going to contact that Intake Specialist to set up next steps. They will walk you through it all and conduct another Level of Care (LOC) to see if anything changed. (Like Autism gets better, right?) This is when you will select your CASE MANAGEMENT COMPANY. They will give you a “pick list” of providers and you have to pick one. Do your homework here before you pick. Some are better than others and you want someone who fits your family’s needs. I highly encourage you to call some of them and interview them. (see my next blog post on tips and tricks) You can also ask around to see who other families use and get references. You always have the option to change later, but it will benefit you to select wisely. They are going to be your partner in this and you want to have a company that supports you and your child.
OKAY, WHAT’S THE FINAL WORD?
Here is the deal - apply for the Waiver! It is time consuming, but if you didn’t catch it above - IT IS WORTH IT! Ask around to other parents and caregivers to see how they are using the Waiver dollars, but here is my story.
My daughter received her waiver at about age 14. I had no idea how to use it, so I started with RESPITE. This allowed me to go to the grocery, go on a dinner date with the hubby, mow my yard, whatever and I had someone that was there with my daughter helping her with her own skills. We started with once a week.
As she got older, I started using more hours in the summer and had her participate in day programming (community and facility based services). I also utilized something called PAC (which is kind of like respite) to provide her with some 1:1 assistance during the day program. This allowed me a peace of mind in going to a group based day program to ensure safety, security, and comfort.
Now she is out of High School and attends a day program two times per week. She is eligible to attend more, but we just haven’t done that yet. She also participates in ABA therapy (NOT part of the Waiver) so she gets that a couple days in addition to day program.
Believe me, you will need these supports - especially when they get older! Think of your child as an adult and there is no longer SCHOOL to send them to. What then? I hope this helps, but if you need further guidance, please don’t hesitate to reach out!