By Lyla N.
Hopefully you read part one of this story, but if you didn’t, here’s a quick recap. We went from a place where support felt nonexistent to a floodgate of professionals wanting to help us achieve the impossible. Our home is humble, but it’s filled with incredible therapeutic tools. We have access to brilliant people and organizations. I have time to breathe and can actually afford to keep up with my son’s special dietary needs. The more I learn about what happened to my son while I was pregnant with him, the more I realize how absolutely incredible he is and why he really does make the world better by being in it. It’s a strange place to be in when you are in the room with experts and they tell you, “I have no advice or referrals because you are doing it all—I’m just excited to see what your son can do.” My son was born with a genetic cerebral palsy and autism that was further complicated by a missing piece of his brain. however, he’s considered limitless because of this incredible access. Gaining access to these services comes with great challenges. It’s something we have to fix in our society. But until we get to that vital moment of societal inclusion, we as parents have to do the hard labor of advocacy.
Medicaid accessibility dramatically differs from state to state. From Health and Human services “Medicaid is an assistance program. It serves low-income people of every age. Patients usually pay no part of costs for covered medical expenses. A small co-payment is sometimes required. Medicaid is a federal-state program. It varies from state to state. It is run by state and local governments within federal guidelines” Most states have a Medicaid waiver for children. This waiver allows families who have a child with a disability access to Medicaid support, even though they are above the income limits. The waiver makes it so the income of the child is looked at as separate from their parents. How access is defined is dependent on a ton of factors. For example some states look at mobility as the defining need, others mortality, but many states are understanding in that disabilities such as autism, oppositional defiant disorder, and attention deficit and hyperactivity disorder can qualify for Medicaid access.
Medicaid is not Medicare, they are dramatically different; As per Health and Human Services- “Medicare is an insurance program. Medical bills are paid from trust funds which those covered have paid into. It serves people over 65 primarily, whatever their income; and serves younger disabled people and dialysis patients. Patients pay part of costs through deductibles for hospital and other costs. Small monthly premiums are required for non-hospital coverage. Medicare is a federal program. It is basically the same everywhere in the United States and is run by the Centers for Medicare & Medicaid Services, an agency of the federal government.” Medicaid is more comprehensive, and helps with in home care, such as nurses and respite care. Assistive equipment can also be covered under Medicaid with special approval forms made by doctors. Depending on the state, funds can be made available to have non conventional interventions such as music therapy, however different waivers within even the same state can dramatically differ from the standard Medicaid program. While Medicaid is incredible, some states are better at managing their Medicaid needs than others. Some become restrictive in how they run, while others understand that parents who do this work are truly trying to empower their children and will allow parents to pick their therapist and will listen to doctors who write referrals for these services, which you find in states that carry the Katie Beckett/ TEFRA waiver.
This website is everything and really helped me understand how I went from no support to an overwhelmingly beautiful system: https://www.kidswaivers.org/full-list/. I am a hard advocate for the Katie Beckett waiver, but understand that not all Katie Beckett states run as well as others. There are also other states with programs that are not called Katie Beckett but equally amazing and empowering.
My Infant and Toddler coordinator was an epic hero. She came over and looked over the daunting paperwork. I spent 10 years of my professional life helping offenders re-enter society—when paperwork and bureaucracy intimidate me, you know it’s something serious. Not impossible though. We got approved in three months from start to finish. This is how I did it and it continues to get praise from the investigators who approved us.
1. Contact Health and Human Services (HHS).
The HHS website is not only important but it’s powerful to look at before you call. Look up waiver programs. During our call with HHS, I still asked about waivers available in my state; this is important because sometimes programs change. Katie Beckett states not only let your child have Medicaid, they also have extra funds you can use for experimental treatments or therapeutic equipment or respite care. These funds are sacred and hard to attain, but they can be the difference that can take a completely dependent disability and help empower them towards the goal of autonomy.
2. Look at your state’s parent advocacy organizations. In Idaho we have Idaho Parents Unlimited (IPUL). Organizations like Parents as Teachers can also be extremely helpful! IPUL is a disability advocacy and parent support group which honestly can explain all of this much better than I can. I say that cause while I’ve gotten my family and several others families approved in a matter of months. IPUL has helped hundreds. Parents as Teachers is a nation wide nonprofit that empowers parents with young children with vital tools and information on the meaningful programs for your family while not experts in advocacy for disabilities, they are very well versed in the different programs that a community offers and works closely with HHS..
3. Make a binder/accordion folder. For my son’s school I have a binder; at home it’s an accordion folder. The difference is that I want fresh sheets without holes so I can quickly make copies when needed. What goes in it? Everything—every assessment, every single report from your doctors, MRIs, prenatal workups, every report from the therapist. Even include the eye doctor and the dentist. If it’s a part of the disability, you want it in your accordion folder. If you are currently pregnant I highly suggest starting this now. If you aren’t and you don’t have this done, start now. You’ll find you’ll be going back to this for multiple times in your child’s life.
4. Know your dates.
Know when your HHS and Medicaid deadlines are. I put things in my phone. I tried journaling, but I need something to buzz me, something that’s always there and that I have with me. I also have a watch that helps me find my phone. I set alarms for dates that I need to keep track of, like two weeks before documents are due and keeping track of upcoming doctor appointments. You can get some insights on these dates from your HHS call.
5. Prep for packet day.
You will get a packet with Release of Information forms (ROIs) and a very brief set of instructions. ROIs allow your doctor communicate confidential information to the Medicaid investigators. This packet is vital, and you can’t take it lightly. If they say to return it in two weeks or 30 days they mean it. If you miss a deadline, there are no do-overs for several months.
6. Complete the Release of Information forms.
Take one of the ROIs and fill out the personal information section of the form—name, address, phone number, your child’s name, and diagnosis. Leave the organization, therapist, and types of information blank for now. Sign and date it. Then make a photocopy of the partially completed form for every doctor and therapist your child sees. (Keep the original partially completed form so you can use it again later). HHS normally sends you only three to five ROIs, but we see 20-something doctors and therapists. Each service provider needs their own form. Especially for the first time you go through this. Take it from me—don’t just list current doctors on the forms and send them in because you will need an ROI for any future providers as well.
7. Make copies of the forms in the accordion folder.
Being prepared reduces wait times for everyone—ultimately for you and your child. It sometimes takes months just to go back and forth between investigation offices and doctors’ offices, especially if you check the wrong box for releases. Make sure your Release of Information forms are accurate and complete. However, it doesn’t hurt to call ahead to the doctor’s office and let them know that an investigator through Medicaid will be calling. You can fill out an ROI for your doctor’s office and place that investigator’s company name on the consent. Having the copies from your accordion folder or having your doctors send you the important documents makes your life so much easier when you send it with a complete ROI.
8. Highlight what’s important.
Go through all of the documents you have collected from each provider who services your child and highlight key information. For things like the MRIs you can highlight the diagnosis. This document is pretty massive and hard to read—by highlighting the diagnosis you help the investigators get to what they need faster.
9. Use small clips. Attach the ROI to the diagnostic report with a paper clip. Don’t staple or hole punch because you could accidentally cause a rip in the document or inadvertently cover up an important word. You also don’t know how the investigator will file your document.
10. Use sticky notes with clear information and neat writing. Add a sticky note saying exactly what the document is. Include the contact info like phone number and fax number for records. Add the date of the document and how long you were a client there. Make it as short as possible and as legible as possible to read. This is also great for you because it makes it easy to track if you skipped any medical professionals.
11. Do this for every doctor and therapist! Continue with this process—one for every therapist and doctor your child sees. For therapists you just need the most recent evaluation they did. But keep in mind, if you have three physical therapists, you want one from each therapist.
12. Get fresh eyes. Have someone look over each ROI making sure has the accurate information and it’s signed. Make sure the date is correct and all the documents match.
13. Mail the massive packet using a signature service. Also use a waterproof envelopes. Call me paranoid but I don’t trust anyone when it comes to this stuff—the last thing you want is for your packet to get misplaced and either miss your deadline or have to redo it.
14. Breathe.
Seriously, I know, I hate this, too, but it’s going to make it better in the long run.
15. The interview. During interviews always be completely honest about your child’s experience. However when answering the questions, answer them from the perspective of the worst day in the last three months. Be specific about their challenges, their abilities, and their regressions. This isn’t bad-mouthing your kid. Don’t ever belittle your child around an interviewer—they seriously hate it, and it won’t help your child. But be honest about the actions you’ve taken and honest about how your child experiences the disability. Talk about the biting, the kicking, and the abuse you take as parent if that happens. It’s hard to talk about in a way that doesn’t make your child look like a monster, but remember this is a part of the disability.
16. Nothing is final until you get a letter. If an interviewer tells you that you are such an incredible parent that your kid might not be eligible, don’t buy it! Keep going and push it quickly out of your mind, ; it’s the worst compliment, and I don’t even know why they say it! Nothing is real until you see it in writing!
17. Keep track of the next step. Do you have to take a class? Do you have to hire support brokers or a fiscal agent? Believe it or not, if your state requires you to hire someone and you don’t do it in time, you can lose your services. I helped one mom whose services were delayed for years because of this. You can be proactive in a couple of ways. Going to HHS or calling them and asking is a great way to know what the next step is after you complete the packet. They should have a list of support brokers or community services workers in your area. There might be respite providers. Think positively and start interviewing and putting out feelers. If you have to have a support broker in mind, know they are not all created equal. I had one tell me that swings were toys and would never be covered for a kid with cerebral palsy! Don’t worry, I let her have it. If your therapist uses something for your kid and it’s something your therapist supports you having at home, you can use your extra funds if you have them for it.
I know it’s a lot. But this has proven helpful for me and the other moms I have advised who were either scared or previously rejected. And yes, they all got approved quickly. The biggest thing to realize is that this mountain was built to block out the few that would abuse it. It’s frustrating. But by going into this process, you finally will get the incredible support to achieve the impossible, and you probably will even get a break once in a while. An organization I love who is fighting this injustice is Idaho Voices for Children. I am praying there are similar voices like this in every state.
There are, of course, massive differences between the states. Some states, like I heard in Texas, want you to drive to Dallas to have your packet notarized. Other states are quick as long as you’re organized, while others will take a long time even if you are organized due to long wait lines, but being disorganized in your packet will get you removed entirely from consideration.
Thanks to Katie Beckett and my incredibly awesome and amazing state of Idaho, my son can walk, he’s got a massive amount of support, and while our journey is long, I believe one day my son will become independent. So many times, I’ve heard of mothers in similar situations who lack this incredible amount of support who fear that they will die before their child and leave them unprotected. This is a shocking thing to see, but it’s a very honest and real sentiment. It’s because they know their children will not be able to thrive without them. Together through advocacy and unity we can help those who were born with disabilities become empowered adults, and while they still may require inclusion and support, they will have the best chance at autonomy, perhaps even achieving complete autonomy. This is my dream for my son, and together with the support of our community, we are turning it into a reality. His ability to become independent is a benefit to all in the community, but mostly to himself. I hope you find this information helpful and empowering.
With love and support
Lyla