THE MYSTERY OF THE “MEDICAID WAIVER”: CASE SOLVED!

For most parents with a newly-diagnosed child on the autism spectrum, one of the most common questions asked of them—and the most common responses provided to this question—goes as follows:

 

“Did you get your child on the Medicaid Waiver?”

 

“Uh…what’s that?  I have no idea what you’re talking about.”

 

THE MEDICAID WAIVER RIDDLE

You see, most of us who entered into the autism world through the school or medical system gateways may not have been given all the fine details about where to go for help in supporting our children with autism as they grow up.

 

Now, in their defense, both of these systems have a lot of people to serve in the one area they do best.  We can’t expect them to be solve ALL of one child’s issues.  Some families who go through a clinic that specializes in autism may have been notified of this support, but many remain clueless. I most certainly was.

 

Enter in another autism mom.

 

It was she who made me aware of the type of help that comes with the waiver. I remember looking at her incredulously. She rattled off the kinds of therapy assistance and parent support under the waiver…

 

RESPITE + MUSIC THERAPY + RECREATIONAL THERAPY + SPEECH/LANGUAGE THERAPY + OCCUPATIONAL THERAPY + BEHAVIORAL THERAPY + MORE =

MIND BLOWN!

Say what?!  What is this mysterious thing called the Medicaid waiver? I must crack this code!

 

Many parents with newly-diagnosed kiddos often have a knee-jerk reaction in trying to get help for their kids. That includes spending themselves into debt in search of a magical solution to autism. ABA is often suggested as the first go-to therapy, since addressing the “problematic behavior” of their child in the home, school and public places is foremost on their minds.  Many people, especially autistic individuals themselves, have a problem with ABA and need alternative solutions to therapy.  This is where the waiver comes in.

 

With an autism diagnosis, your child can qualify for the Medicaid waiver.  This means your child (and you as a parent) benefit from the aforementioned government-paid-for resources—FREE TO YOU!

DIVING INTO THE “WAIVER WORLD”

During most of the 20th century, many people with autism were institutionalized—hidden away from the rest of society.  Researchers in the 1980s found a disproportionate use of Medicaid funding, instances of abuse, and a general lack of quality of life for most.  Many did not actually need to be institutionalized.  With the right kinds of support, they could integrate well into the community. They could live at home or in group homes with adequate supervision, earn self-worth and respect that comes from employment, and feel love and support by their friends and family.  The Home and Community-Based Services (HCBS) Waiver program was born.

 

The goal of the HCBS is to help those with developmental disabilities learn to become as independent as possible as an adult and have a meaningful life in the community.  The “waiver” means to “waive” the need for institutionalization.  It also generally means that the parent’s income is “waived” in order for their autistic child under 18 to qualify for Medicaid.

 

Both of my kids have autism. Therefore, both of them have the Medicaid waiver. Our income would be considered too high to qualify for typical government welfare assistance. But the Medicaid waiver allows my kids to not only have the therapies and services listed under the HCBS waiver program but to also have the Medicaid insurance for standard medical needs.

BONUS!!

For those without good family insurance through a job, this is a lifesaver.  For us, we have decent insurance through my husband’s employer, so Medicaid is used as a secondary insurance to help with expenses not totally paid by our own.  Certain therapies like speech and language are generally run through Medicaid and not the waiver itself.

 HOW DO I APPLY FOR MY CHILD?

Actually, the real question should be “WHEN do I apply for my child”.  The answer is: “RIGHT NOW!” Like, as soon as you get that diagnosis! These services help every age, from small child to adult.

 

SIDE NOTE:  I live in Indiana. So, I will be discussing the process of applying in Indiana. It is one of only a handful of states that has a waiver program specifically for autism. Other states include autism within a broader developmental disability category.  EACH STATE USES ITS MEDICAID FUNDS DIFFERENTLY. This means the application process, waiting period, and the benefits received will be a little different. 

Check out Medicaidwaiver.org for state-by-state information on the Medicaid waiver program and how to apply.

Sad to say, you don’t just apply for the waiver and then automatically get help—this is government we’re talking about here.

 

Depending on your state, the wait to first be approved and then the wait to actually receive services can be a total of several months to a few years.  (In Florida or Texas, it could take up to 10 years or more!)  The time I first applied for my son until the moment he received funds was 7 years.  For my daughter it was 2 years. Now, it may take families less than a year.  (It seems like enough parents in Indiana got fed up and fought to have those funds available sooner.   GO PARENTS!)

 

In Indiana, the “WHO” you must contact is your local area office of the Bureau of Developmental Disabilities Services (BDDS). Here are 10 major steps in the waiver process for families with a child with autism under age 22:

  1. BDDS is your POINT-OF-ENTRY to the Medicaid waiver process. They will send you an application. Confirmation from your physician (MD or DO) that your child has autism is required.
  2. Once you have submitted your application, you will be contacted to set up an interview. Bring your diagnosis paperwork from your child’s doctor, school, therapist, etc. to help determine the Developmental Disability (DD) of your child. Most likely your child will qualify for the Family Supports Waiver (FSW), but in special cases the child may need more support under the Community Integration and Habilitation (CIH) waiver. An intake specialist will complete a preliminary assessment for Level of Care (LOC) to figure out what kinds of support services your child may need, based on if the disability…
  • Is similar to Intellectual disability
  • Originates before age 22
  • Will continue indefinitely
  • Causes functional limitations in 3 major areas of life (speech, executive functioning, etc.)
  1. Your child will then be placed on a waiting list. After a period of time, you will then be “targeted” by BDDS with a letter in the mail. DON’T LOSE IT! This means your child has been approved for services. At this moment in time, your child does NOT have funds to start services…yet.
  2. You will confirm with a reply letter that you still want waiver services. A BDDS intake coordinator will follow-up with a current LOC.
  3. Take your “target letter” from BDDS to your local Medicaid office to apply for Medicaid. This is the FUN part!  (Haha, just kidding). They will require you to submit all kinds of lovely proof of income.  If you make too much, YOU will be denied. But that letter will allow your CHILD to have Medicaid insurance.
  4. Once you apply for Medicaid for your child, now you have to go to Social Security Administration to apply for SSI with the BDDS target letter. If you make too much, your child will be denied income benefits.  (For us, we knew we would be denied; this was a required formality as part of the process.).
  5. At this point…DON’T GIVE UP! YOU’RE ALMOST THERE! Applying for government help is mind-boggling insanity, but it’s so worth it in the end!
  6. Sooner or later, BDDS will send you a “pick-list” for someone to manage the funds allotted to your child ($17,300 a year as of 10/17). This means you can start to access services…YEAH!  This case management service is a vital part of the Medicaid Waiver program. In Indiana there are several from which to choose. This “open market” has improved services for waiver individuals as they must compete for your funds.  Ask about their experiences with the waiver and how they train their case managers.  You can always change case management companies if one doesn’t work out.
  7. From now on, your waiver case manager will be your regular POINT-OF-CONTACT. This person will conduct a thorough assessment of your child’s needs, strengths and interests.  They can recommend what types of therapies but may not openly recommend a certain agency.  They provide lengthy lists of agencies for each type of service, so you’ll have to take some time to assess the best person and agency with whom to work.
  8. You choose—and then intimately work with on a weekly-monthly basis—the direct care service agencies that provide respite, therapy and other services. I have loved working with these therapists, and my kids have developed trusting, productive relationships with them.

 

With the Medicaid waiver, you are now part of a TEAM that supports your child. Your waiver case manager and agency coordinators will meet at your home (or wherever convenient for you) on a quarterly basis to make sure goals are being met for your child.

 

ALWAYS KEEP IN MIND:  You have the right, at any time, to alter the course of waiver services if things don’t work out, such as dropping or adding certain therapies, agencies, and workers.  Also, you’ll be limited by a yearly budget, so your child can’t “do it all”.

 

In our kids’ early years, we needed more respite. Later on, we dropped respite hours and added therapies best for our kids when they became more available in our area (like recreational and music therapies).

SOLVING THE MYSTERY: CASE CLOSED

Hopefully, I have provided answers to your questions about the Medicaid waiver and how it can help your child with autism. I do recommend that you create an organizational system of some kind to keep track of the paperwork and offices involved.  Congratulations…you are now officially a “case manager parent”! Join the club!

 

Our lives have been positively impacted by the people we have met through the waiver, and we are tremendously grateful for the support this waiver provides. My kids loved hanging out with their respite helpers. They have thrived under the direction of their music therapist, learning new instruments and even composing music!  And my daughter has loved spending time outdoors with her recreational therapist.

 

Despite the frustrations that come with dealing with government bureaucracy and waiting for years in anticipation, I encourage you to push through for your child.  Your time and efforts will be a worthwhile investment in his or her future.  Our lives have been—and will continue to be—blessed by it.

 

UPDATE: I wanted to add a few more details about the benefits of the waiver that few know about:

  1. You can apply for the America the Beautiful Access Pass, which allows a person with autism and 3 of their guests to get into the national parks and other federal sites for free for a lifetime.  It also includes deep discounts on camping and other recreational activities (i.e. 50% discount on camping sites in the Smokey Mountain National Park).
  2. You can apply for special discount programs that comes with having Medicaid, such as the Access Pass Program that allows those with the waiver and their families in Indiana to get in to certain museums at a minimal price (i.e. the Indianapolis Children’s Museum costs $2 per person).
  3. There are other benefits with having Medicaid such as a discount on Amazon prime membership.

Check to see if your state has these types of programs associated with the waiver. Other benefits may be strictly based on financial need and those who qualify for SNAP/TANF/SSI.  Many autistic adults can access these benefits once they turn 18 and qualify for SSI.

Life, Animated: Disney and Autism

LIFE, ANIMATED: Disney Lessons and Autism

The World of Disney Meets the World of Autism

This article is about the documentary”Life Animated” and the Disney lessons that apply to reaching those with autism.

What happens when you merge the world of Disney with the world of autism?

If your autistic child loves Disney like mine, then read on.

You will discover valuable insights about the power of using the lessons from Disney stories to forge a connection between the inner world of autism and the wider world beyond ourselves.

Disclaimer: 

I am NOT a movie critic. 

I viewed this film from the perspective of a parent who has children with autism (aka, the “intended viewer”).  Rather than critique the quality of the film, I observed the lessons both the parents and their son learned over the course of their autism journey.  I found new insights as well as emotional support by relating my own experiences to theirs.

I hope you can, too.

 

INTRODUCING…THE SUSKIND FAMILY

From the beginning of the documentary Life, Animated: A Story of Sidekicks, Heroes and Autism, it’s easy to see that Ron and Cornelia are your pretty typical American parents.

They work hard to support one another. They nurture their children to achieve developmental milestones.

And they record their journey raising their kids through video, photos and writing.

But when their youngest son turned three, their world turned upside-down.  “Owen vanishes,” says Ron. His motor skills deteriorated, he was no longer sleeping well, he lost eye contact, and his language processing broke down, only reciting “gibberish”.

“Someone kidnapped our son…”

Owen had AUTISM.  

The painful devastation of receiving the diagnosis for the first time was still very evident on his father and mother’s faces, even though Owen is now in his 20s. Their doctor worried he would never talk again, who told Ron this problem was “out of my league”.

It hurt me to see their longing for the way he used to be.  The idea they could still CONNECT with him seemed gone.

TURNING A PAGE…

It’s clear in the opening scenes of the film that adult-Owen understands and communicates very well with those around him.  To go from “not talking at all” to expressing himself in full, descriptive sentences obviously means…

SOMETHING WORKED! 

After receiving the diagnosis, they did not resign themselves to the possibility Owen would never improve.

But despite four years of therapy, Owen was still exhibiting “echolalia” (a repeated pattern of speech that mental health professions believe to be dysfunctional).  It was not certain that he understood the meanings of what he said.  His parents were starting to believe that wouldn’t change.

Until… “Juicervoice”.

DISNEY TO THE RESCUE!

Owen loved watching Disney movies.  It was the only way to keep him calm and happy in an overstimulating world.

It was also the best way he could connect with his older brother—if they couldn’t talk together they could at least have that shared experience of enjoying Disney side-by-side.

As the family watched The Little Mermaid one night, Owen said “juicervoice”.

Finally, it dawned on the family that he was saying “Just your voice.”

This is the line used by the Sea Witch to convince Ariel that taking her voice was a small price to pay for being human. Owen’s parents believe that this line has significant parallels to the type of challenge he faces in connecting to others using his voice.

In other words, he understands its relevant meaning for himself…more than just parroting words.

Ron expresses his astonishment and hope that Owen is “still in there”.  They “set on a rescue mission to get inside…autism and pull him out”. And they used Disney movies as the rescue lifeline.

 

“DISNEY” THERAPY

It wasn’t enough to allow Owen to memorize all the dialogue and act out the scenes of every Disney movie.  He had to interact with others who also knew the scenes.

His parents used puppets to enhance the interaction. This may be helpful for those on the spectrum who don’t tolerate full attention to themselves in their interactions with others (it’s diverted to the puppets).

They knew being able to recite movie-lines well was not the end goal.  “Scripting” was a functional means of working toward achieving meaningful, two-way social communication.

Simply practicing the dialogue also enhanced Owen’s own speech and language skills, both receptive and expressive.  Instead of making Owen practice language that did not have meaning for him in traditional therapy, they used something he was passionate about.

As Owen got older and mastered speech and language, his parents and therapists moved on to helping him figure out the subtle nuances of social communication.

Now it wasn’t enough to act-out movie scenes. They used the Disney stories to help him navigate the complicated social world of non-verbal communication.

Owen likes that fact that animated characters have exaggerated facial expressions to convey emotions—sadness, anger and joy are black-and-white. The slyness of Iago in Aladdin is easily conveyed when he looks to a scheming Jafar.

Disney movies have also helped Owen deal the emotional burdens of transitioning from one setting to another.  The film shows scenes of Peter Pan as Owen is about to embark on a new journey into adulthood: independent living away from home.

Whenever he encounters a new step in his life, he refers to scenes from Disney movies that he can relate to and thereby feel emotionally supported.  “My childhood days are over, but that doesn’t matter,” says Owen, sitting by himself in a dark theater, scripting a scene from the Lion King in which Simba, now king, roars triumphantly.

PROTECTOR OF SIDEKICKS

One of the most haunting fears of any parent whose child has autism is the prospect he or she will be bullied.

When Owen attended a new school, he became more withdrawn and his behaviors regressed.  After a while, they found out that a couple of boys at school told Owen they would burn his house and hunt him down, tormenting him.

Because he thinks so literally he thought his house would burn down and kill his parents.  As Cornelia recounts this horror, scenes of Quasimodo (Hunchback of Notre Dame) getting mercilessly harassed are shown. (I’m basically crying at this point…)

After confronting the bullying at school, Ron noticed Owen working on something in the basement. He had been drawing Disney characters, but they are all sidekicks—no heroes were drawn.

Owen has identified himself not with the movie heroes but as “the protector of the sidekicks…(because) no sidekick gets left behind”.  He wrote “The Land of the Lost Sidekicks”, of which the film shows a beautifully created animated short.

Owen had used Disney characters and themes to create an original story to process his own complicated emotions associated with rejection and loneliness.  Through his story he identifies with those sidekicks who provided him emotional support on his journey through dark times.

At the end he rises to become a “protector” of those “left behind”.

I caught myself thinking, what an amazing achievement…not just for someone with autism, but for ANYONE.  If this isn’t a perfect example of self-empowerment, I don’t know what is!

APPLYING THE LESSONS FROM “LIFE, ANIMATED”

I laughed, I cried, I learned…

I had previously read the book (which I loved because I could relate to their journey well), so I knew what to expect.

I didn’t expect this documentary to be such a visual treat.

Using scenes from Disney movies that mirrored Owen’s personal growth experiences was very effective in conveying the importance of this form of media in their lives.

Needless to say, it’s a good movie to watch with your autistic son or daughter.  My daughter got into the animated scenes of Owen’s story since she loves to draw.

Because Disney is so ubiquitous in our culture, it should be easy for someone watching this to sense how certain characters and themes were necessary for him understand particular situations in his life.

Disney themes have a steadfast, enduring quality that provide a comforting reassurance. Despite hard times, individuals will rise to the occasion with love and support from others.

As my own kids with autism love Disney so much, this film is incredibly relevant to our family. My kids picked up language easier from watching these movies, especially my son who used closed-captioning as he watched them.

Lesson One: Learn with Joy

Owen’s journey exemplifies that using an AFFINITY-based approach to learning life skills is very effective for those on the autism spectrum (not just a “strengths-based” approach).

The Suskinds approach using Disney is what Temple Grandin has been advocating for years:

target a person’s interests and obsessions rather than general positive qualities and skills.

A person’s “affinities” are used not only to motivate the person to deal with life issues and learn skills in therapy-based settings but can also be used to create and produce a stand-alone product that others appreciate or toward a career.

These affinities should not be seen as a prison but as a “pathway”.  Instead of viewing these “obsessions” as “dysfunctional”, mold them into a functional learning process in which the child learns to interact with the wider world.

As my own children are now in their teens, their childhood Disney passion has become a Disney obsession.

As Disney movies have motivated my son to learn language, he is now self-empowered to write his own Disney stories.  My daughter is obsessed with drawing cartoon characters with intense emotions and themes.

I convinced the speech and music therapists to motivate my kids through their Disney-based interests.  My son practiced social communication skills as a “park tour guide” in speech and composed a Disney musical score.  My daughter learned speech, language and executive functioning skills by reading Disney stories and singing and playing Disney songs.

I even used the original classics upon which Disney based for his movies to motivate my daughter to read books in our homeschooling endeavor.

Without passion, learning language and social skills may be a more arduous process for both the parents and the child.

This link provides more information on the affinity-based techniques that may be used at home or in therapy.

Lesson Two: Get on the Floor and Out of the Box

In order to connect with Owen, Ron and Cornelia had to also know the Disney scenes and dialogue really well themselves. They changed their thinking (and the prevailing thought at the time) that too much TV was bad, that these Disney movies could actually be good for his education and growth.

Just like play-therapy, they got down on HIS level to reach him—to “think outside the box”.

Not only does this mean recognizing your child’s interests but taking the time to really interact in a way with your child that may feel weird or uncomfortable.

For example, it seemed odd or wrong that my kids used movie scripts to talk. But I realized they were able to talk to each other.

“Scripting” was not necessarily a bad thing because they were learning to talk back-and-forth in a two-way social conversation. Once I played along, I had more joyful, meaningful interactions with my kids.

It also means being flexible enough to FAIL—to recognize when something doesn’t work and letting it GO. The reality is that a child cannot be MADE to behave a certain way just because we want them to.

If an approach doesn’t work after a period of time, try something else. Sometimes they have outgrown a certain affinity and it no longer motivates them.  Or an approach is too demanding and exhausts them.  Even therapies can get old and no longer be effective—do something new and fun!

And use puppets if you have to!

Lesson Three: Identify a “Meaningful Life”

I admit that some films with an autism character feel exploitative.  This one did NOT.

Ron and Cornelia don’t complain about Owen’s “bad behavior” but reflect upon the multitude of self-adjustments they had to do in order to meet him where he was at.  Their journey of empowerment and self-discovery was just as important as Owen’s.

As his caregivers, they naturally worry if he has the right social and executive functioning skills to live independently and to his highest potential.

The question of a “meaningful life” is presented in the film. That often comes up in conversations with others, including therapists in IEP and ISP meetings.

The life-goals for Owen are discussed within a collaborative team of “experts” (including mom). Owen generally agrees or disagrees with the ways of achieving those.  While he’s involved in the process of making decisions for himself, he’s not fully “running the show”.

As he gets older, it becomes harder for mom to accept reality of his “deficits” that she has worked so hard to help him overcome as a child (even homeschooling him).

Cornelia’s look of uncertainty and angst hit me in the gut. I know that I will be facing the same reality with my own kids soon. Knowing just how much or little outside help they are going to require to live a good life.

While most parents are dreaming of their children’s futures with starry eyes, many parents whose children have autism often have a very clouded vision of their futures.

Only when I reflect upon some real-world examples of “normal people” needing guidance and support well into adulthood do I realize that I may be taking the perspective of future despair too far.

Ron remarked that letting our kids fail is actually the goal for autism parents.  We need to take a leap of faith and let our kids advocate for themselves at some point.

This was illustrated by the fact that while Owen was invited to give a speech to an autism panel in Paris, France. Ron refused to write the speech for him.  He was firm in making him discover for himself what he needed to say.

We can cheer-on our grown kids but we can’t do it for them. A meaningful life means letting them discover for themselves what they need to do to grow in self-confidence and contentment. It doesn’t necessarily mean a completely independent existence.

FINAL THOUGHTS…

I found it interesting that the Suskinds discuss the fact that Owen “disappears” into autism.  To me, it seems evident that he regressed into autism rather than was “born that way”.  They never say he has “regressive autism”.  Instead they use metaphorical terms to describe their experiences.

It’s unclear whether they explored dietary or other medically-based interventions. Based on their language to discuss his challenges, they were more concerned about helping him socially connect to others through innovative means rather than be medically-treated.

The agenda of the documentary is not about what they believe caused his autism but on the present developmental reality of autism.

I recommend this film for those have autism, for those who love someone with autism (especially parents), and for those who work with those with autism.  If it makes you change your perspective even a tiny bit, it will have served its purpose.

As for myself, it led me to conclude that what I was doing to help my kids was actually okay…and that I’m not alone.  I had the same struggles: emotional breakdowns, therapeutic resistance, and educational dilemmas.

But I also have fun, happy experiences with my kids that help them learn, grow and connect with others (like going to Walt Disney World). Knowing that they have achieved so much already gives me hope for their futures.

What a privilege to be granted access to witness the powerful potential in all of us to rise above the challenges we are given with the support of those who love us.

The documentary film LIFE, ANIMATED can be found here.  LIFE, ANIMATED: THE STORY OF SIDEKICKS, HEROES AND AUTISM can be found on this non-affiliate link here.

 

If you want to experience the magic of Disney in real-life, I would love to help you plan a magical vacation to Walt Disney World in Florida or Disneyland in California!  Just click on this link for a free travel consultation!