Waiver Journey

Last year we really started to feel the pressure of how Elliot's diagnosis was going to change our lives. Appointments sped up, imaging and labs were being scheduled, and procedures were being discussed. We also started to notice subtle delays in Elliot's development. The most significant daily issue we were dealing with though was difficulties with feeding. Elliot was puking excessively any time we tried to feed him purees and sometimes before we even got them to his mouth. We realized that there was something wrong, but we ended up getting stuck in a waiting period for feeding therapy. We ended up having three feeding therapy evaluations before we ever even got started with feeding therapy. The most stressful part of the feeding issues was the pressure we were getting from daycare. They let us know that he needed to make progress in feeding and to get off the bottle or we would need to find alternative child care. This started our process with medicaid waivers.

I posted in a FB support group for MCAP and a sweet mom reached out to me. She let me know that Elliot may be able to get a medicaid waiver which could help get us attendant care and increase our access to services while reducing our medical costs. She wasn't sure of what waivers were available in KY but she knew of another MCAP mom in KY and sent me her contact information. After speaking with her, we reached out to LifeSkills and started the process for applying for the home and community based KY medicaid waiver.

Step 1

Apply for SSI- got denied, but not due to diagnosis but due to our income. You have to apply for SSI first when applying for the medicaid waiver so that it triggers an MRT (medical review to establish physical disability) if SSI is denied.

Step 2

Apply for KY medicaide- again got denied due to income, as expected.

Step 3

Complete application for HCB waiver.

Step 4

Placed on waiver waiting lists for HCB (physical disability) and Michelle P (intellectual/developmental disability) waiver programs

Step 5

Waiting list for HCB was approximately 6 months, scheduled for a level of care assessment with nurse on Jan 27

Step 6

Received denial notification on Feb 5th, required response by Feb 12th if requesting reconsideration, and Feb 28th if requesting an appeal.

Step 7

Requested letters of medical necessity for HCB waiver from all of Elliot's providers, wrote a personal letter requesting reconsideration, and had a friend also write a letter requesting reconsideration. Be sure to address whatever the denial letter said was the reason for denial and prove medical necessity.

Step 8

Contacted medicaid due to issues receiving mail (never actually received physical copy of denial letter, thank god for calling someone who emailed it). Medicaid worker stated his application needed the MRT to be completed. MRT requires a list of all providers and have to know first appointment, last appointment, next appointment. They also review imaging and procedure/surgeries (our provider list was so extensive, they bypassed going over labs/imaging and procedures/surgeries and decided to just request all records). Medicaid requested I go in office to sign a release for MRT and bring a copy of my photo ID. Waiver program worker reviewed everything in office and stated we were on track to just be patient, but did recommend contact a case management service.

Step 9

Received level of care approval letter, approving Elliot for the HCB waiver. Letter states guardian needs to call DCBS/CHFS to change the type of medicaid on the application to the waiver-supported medicaid (in KY this is comprehensive choices).

Step 10

Contacted DCBS about switching medicaid to waiver supported medicaid. Provider states that this needs to be done after MRT is completed, waiting on medical records.

Step 11

Contacted LifeSkills to request starting the process of case management, also can't be started until MRT is complete. Worker states she will follow up weekly about MRT with medicaid.

So, our waiver journey is still starting but we are on the path to getting medicaid services for Elliot. This would allow us to move him to Kidz Club for daycare, where he could get all therapies in house. This would be covered 100% by his insurance. The waiver could also pay us for attendant care for Elliot as well as help cover the cost of our health insurance if we keep Elliot on my work insurance. We aren't counting our chickens before the eggs have hatched, but Jack and I are both feeling a sense of relief.

The stress of raising a child with a rare disease isn't just dealing with the unknown of their medical future- it's the cost that just keeps going up and up, it's the time lost at work which in turn decreases earnings and future retirement funding, it's the time spent running to appointments, it's the mental energy in balancing what has to be done, what should be done, and what we'd like to do, it's the decreased ability to take time off work to refresh. Despite all these things, I'd chose Elliot just as he is, always.

Friday is national rare disease day, to be exact rare disease day is Feb 29th (rarest day of the year) but on non-leap years it is celebrated on Feb 28th. Jack bought shirts for all three of us to wear on Friday and he decided he's keeping Elliot home with him that day to celebrate. If you're able, please consider donating to the M-CM Network in honor of Elliot and his rare disease. The M-CM Network works to increase awareness of MCAP syndrome and helps to fund research about treating MCAP syndrome. You can donate on this website, if you're interested: https://www.m-cm.net/donate