Medicaid Waiver – Part 1: What It Is and How You Acquire It

The first and most important thing to understand when you begin the process of acquiring a Medicaid Waiver for your child with autism is that you will need a lot of patience. The process also requires a considerable amount of effort. However, after you put in all of the required work and wait patiently, your child will be rewarded with a lifetime of benefits that will make everyone’s life a whole lot easier and much more affordable. So, roll up your sleeves and get ready to learn the ins & outs of applying for a Medicaid Waiver for your child on the spectrum.

In this two-part article, you will learn:

  • What is a Medicaid Waiver
  • The important benefits a Waiver provides to your family
  • How to start the process of applying for a Waiver
  • How to get help with the process of acquiring a Waiver and where to go for more information
  • What happens after you’ve been granted the Waiver.

What is Medicaid?

According to the U.S. Social Security Administration agency, “Medicaid is a jointly funded, Federal-State health insurance program for low-income and needy people. It covers children, the aged, blind, and/or disabled and other people who are eligible to receive federally assisted income maintenance payments.”

What is a Medicaid Waiver?

Medicaid Waiver is a program through the State of Indiana that provides funding for programs and therapies for individuals with developmental disabilities, such as autism. The programs provides money for families to acquire services to take care of their loved ones in their own home. The program provides the additional support services to help individuals gain skills and fill deficits while they’re still living in their home environment.

In other words, according to the Indiana Medicaid agency, “In the past, Medicaid only paid for long term care services that were provided in an institution, such as nursing facilities and group homes. The waiver program “waives” the requirement of an admission into an institution in order for Medicaid to pay for the needed Home and Community-Based Services (HCBS).”

The Waiver services provided are targeted toward the individual’s skill deficits. As a person gains these skills and develops, they may not need the Waiver for their entire life—however it is available for their entire if they do continue to need those services. Most people with autism do need some service during their entire lifetime, but that is not always the case.

Two Types of Medicaid Waivers

Because your child has a diagnosis of Autism Spectrum Disorder, they may qualify for two different waivers under the Indiana Family and Social Services Administration. Basically what that means is that they are eligible to receive coverage through Medicaid because of their disability regardless of parental income.

The waivers are the Family Support Waiver (FS Waiver) and the Community Integration and Habilitation Waiver (CIH Waiver). You can only have one waiver at a time, however when you apply you will go on the waiting list for the Family Support Waiver. If it is deemed necessary to move your child to the Community Habilitation Waiver, that will be determined when your child becomes eligible to receive waiver services. Keep in mind that this is not something that will help your child right away, however, once they have the waiver they will likely have it for life, so it is a good way to prepare for their future needs.

Who Can Apply for the FS Waiver

Anyone in Indiana who has received a a medical diagnosis of autism prior to age 22 can apply for the Medicaid Waiver. There can be extenuating circumstances that are considered if the diagnosis occurs after an individual turns 22, but those are rare. If you or your child has been diagnosed with autism, you can apply for a Waiver regardless of your household income level.

Parents Should Apply for FS Waiver Before Child Turns 18

Parents need to submit the application for their child before the child is 18 years old, unless a parent has legal guardianship of their adult child. Without having legal guardianship for a child who is 18 or older, the parent would no longer be able to apply for the Waiver on their child’s behalf. It would fall to the individual with autism to apply for services once they legally become an adult on their 18th birthday. That is why we stress to parents the importance of applying for the waiver before their child turns 18.

Detailed Explanation of Waiver Eligibility

To receive a Medicaid Waiver you must meet both the criteria for a developmental disability and ICF/ID-DD level of care. The criteria for a developmental disability is defined in state law and means that a qualifying developmental disability is evident and that it was diagnosed by a medical doctor prior to age 22. ICF/ID-DD Level of Care means that an individual qualifies as deficient in at least three of the functional limitations designated in the Code of Federal Regulations.

Your family income and assets are not counted to determine eligibility for children under the age of 18. However, any assets or income in the child’s name are counted. For those applicants who are older than 18 years of age, only their income and assets are counted. Medicaid Waiver financial eligibility is based on 300% of the Supplemental Security Income (SSI) maximum. As of January 2014, the SSI maximum income is $721.00 per month; making the Medicaid Waiver eligibility $2163.00 per month.

Funds available for FS Waiver services are capped at $16,545.00 per year.

How to Apply for the Waiver

Step 1: Call the Bureau of Developmental Disability Services

The application process starts with a phone call to the Bureau of Developmental Disability Services in your district. Your ASI Ally can provide you with the location and phone number of the Bureau in your district. (Or you can click here for PDF map of Indiana districts and list of district office locations.) Tell the Bureau representative you have a child with autism and you would like to apply for the Medicaid Waiver on your child’s behalf.

During that first phone call, the Bureau representative will ask you a few basic questions about your child. Then the representative will mail the official application document to you. Keep a written record of the phone call with the date, time, and name of the representative  with whom you spoke, in case there’s a glitch in the process.

Step 2: Acquire Documentation of Autism Diagnosis

Call your physician’s office to request that your doctor completes and signs the required form about your child’s diagnosis. You must submit the Confirmation of Diagnosis (State Form 54727) with your application to prove your child’s eligibility for the Waiver.

Step 3: Submit Completed Application and Diagnosis Document

The application you’ll receive in the mail is not very complicated. When you submit this application, you’ll also need to include the Confirmation of Diagnosis form, signed by your doctor, to prove your child has autism. (Click here to download the Bureau of Developmental Disabilities Services application forms.)

If you need assistance completing your application, your ASI Ally can help you.

Apply Before An Individual with Autism Turns 22

It is very important that an individual with autism applies for the Waiver and Medicare insurance before their 22nd birthday. An individual diagnosed with autism will still be eligible to apply for Waiver services after they turn 22, but there will be a much more intensive investigation of their abilities and the application process will take a lot longer.

The best strategy is to apply for the Waiver as quickly as possible after your child is diagnosed with autism, because you will receive assistance sooner and for a longer period of time. The date on which you apply is the date your case is added to the waiting list, so it will be in your child’s best interest to call the Bureau of Developmental Disability Services in your district sooner rather than later.

Step 4: Wait for a Phone Call from the Bureau to Schedule an Intake Interview

When the Bureau of Developmental Disability Services receives your completed application and medical diagnosis letter, they will call you to schedule an intake interview meeting at the Bureau’s facility. At this meeting, you will be asked questions about your child’s abilities. Your responses should focus on all of the things your child CANNOT do, because those skill deficits will be the focus of the services you eventually receive via the Waiver.

Step 5: Prepare for the Intake Interview

To help you provide proper responses during the intake interview, think about your child living independently, as if they rented their own apartment. Would they be able to purchase food and prepare meals? Do their own laundry? Take a shower on their own? Pay the rent on time? Think about all of the activities your child would need to do by themselves on a daily, weekly, or monthly basis, if you were not there to help them.

For small children, the answers are fairly easy, because they cannot do much for themselves. For older children, the answers become more detailed and complicated. For example, a 15-year-old child with autism might be able to take a shower without assistance, but will he actually remember to do that? Can he buy the soap and shampoo he’ll need? Can he independently wash laundry to provide himself with a clean towel and clothing? Can he clean the shower stall (and the entire apartment) on a regular basis?

The “level of care” your child needs ultimately determines if your application is accepted. That is why, during your initial intake interview, it is critical to focus on your child’s skill deficiencies—the tasks your child cannot do alone in order to function and survive independently. If your child’s level of care needed to live independently is very low, she may not be in need of enough qualifying services to be accepted into the Waiver program. That is why you need to properly prepare for the critical first intake interview.

One way to prepare for the intake interview is to picture your child living alone in an out-of-state city like Chicago and to consider all of the tasks she would need help with in order to live independently as an adult. The goal is for your child to eventually be able to live an independent life, so you need to figure out what types of services they need to ultimately be in that position. The Waiver is intended to help fill the gaps that exist between an individual’s current survival skills and the skill set they will need throughout their self-sufficient adult life.

Step 6: The Intake Interview

The person interviewing you will ask questions about your child’s abilities in various types of self-sufficiency situations. It is important that you go into the meeting having already considered your responses regarding skill deficits in relation to every aspect of your child’s lifestyle and daily routines. These specific “skill disabilities” will determine your child’s level of need (eligibility) for support services.

Step 7: Wait Patiently for Step 8

After the intake interview, your child will be placed on the FS Waiver waiting list. The waiting list currently is about 12 months from the time the application is received to the time of approval. This is why we stated at the beginning of this article that you will need a lot of patience. But keep in mind two factors: (1) you are dealing with a government bureaucracy, and (2) after your application is approved, the benefits your child receives are available for the rest of their life, which could total millions of dollars worth of assistance throughout many decades.

Step 8: The 2nd Intake Interview

When your child’s name finally makes it to the top of the FS Waiver waiting list, you will receive another phone call from the Bureau to schedule another intake interview, which will be very similar to your original interview. At this second interview, you will receive a list of state-approved case management companies (with contact information) from which to choose your case manager.

Now that you know the steps to take to apply for the Waiver, stay tuned to learn what comes next by reading Medicaid Waiver – Part 2: What Happens After You Receive the FS Waiver.

Kelly Pence, ASI Autism AllyThanks to Kelly Pence, Autism Society of Indiana Autism Ally, for her contribution to this article. If you have any questions, please contact her at kelly@inautism.org or by calling 800-609-8449 x303.

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