December Update: 2018

Look who’s growing!

We are headed to CHOP for the 6-month follow-up visit with the research team in January. It has been six months since we started Baricitinib and we will have PT, OT, and neuropsych tests done to measure changes in Will since starting the medication. Will has made slight progress in his movements, but mostly we notice that he is happier. He still cannot sit, roll over, or accurately reach for toys consistently. He is non-verbal and cannot communicate his needs with us.


We have ramped up the physical therapy sessions and asking for two sessions/week whenever we can get on their schedule. We had a follow-up visit with our neurologist in Maine, and he didn’t realize that we were not doing speech therapy yet. We have tried to find a speech therapist but haven’t been unable to find a practice in Maine that can treat Will. We have heard, ‘we don’t have what we need at this practice to provide therapy.’ Early Intervention therapy (for children under 3 years) in some states provide therapies in the home, but Maine does not. Maine’s Early Intervention program has adopted a “coaching model” but does not provide direct care to children…this has been a huge source of frustration for myself and many other families.

Our neurologist called a practice in Portland that provides augmentative speech therapy evaluations for children and asked the provider to see Will. Typically children 3 years and older start this type of speech (assisted and augmentative) therapy in a developmental preschool setting. In the meantime, Will needs therapy to work on the building blocks of communication. It has been 21 months since we started Early Intervention here in Maine and we are finally getting plugged into a practice that can appropriately evaluate Will’s communication needs.  It would be ideal for Will to get some of his intensive therapies at the same place. Ideally, I’d like to find two therapies in the same building (OT and Speech). We may have to drive 45 minutes for combined therapies, I’m waiting to learn more about the practices in Southern Maine.

Will enjoys when we take his hands and explore with him. At a restaurant, he likes when I grab a crayon and color while bringing his hands along for the activity. He cannot grasp an object by himself anymore; the neurological insult robbed motor planning from him. He likes when we fill the dump truck with colorful items and then dump them on the floor. He also likes it when I put a snack in his hand and help him reach his mouth. The delight he exudes when he takes a bite catches us both by surprise. For Christmas, Will is going to get fat crayons and a sketchbook!

He is thriving!

Will is close to losing his Failure to Thrive diagnosis. He lost weight during his 10 months of not feeling well, battling neurological flare-ups, etc. I kept saying, ‘when he feels better, he will eat.’ Well, we are making progress because he feels better. Someone said, ‘what are you going to do if someone reports you to DHHS because you won’t allow them to surgically insert a feeding tube?’ Well, here we are: gaining and thriving!


We haven’t done any traveling other than hospital visits over the past year. I miss my family; it isn’t like me to go long periods without a trip to Pennsylvania. Airline ticket prices are obscene, and it’s prohibitive to fly the kids to see my parents. Worse, is worrying that they have overbooked a flight leaving a family like ours scrambling at an airport. Hopefully, we can make a trip happen next summer, even if we have to drive. Speaking of driving, Will allows me to drive him about 25 minutes without crying now. I can go to the grocery store, drive to Falmouth for appointments, and even pick up the kids at school.


Many of our friends helped during the time when I was mostly homebound with Will. Our friends would bake us treats, bring lasagna and mac n’ cheese, and Will’s favorite food with crackers: guacamole! Our village never ceases to amaze me. Even our mailman goes out of his way to help make life a little easier for us, he always asks ‘How’s Will?’ Will has shown me the value of slowing down and checking in with people, being more present.

Our extended family: Scott, RN
We have been blessed with the most amazing registered nurse. When I work, Will is cared for by Scott. Scott has been a nurse for 33 years. He has been a NICU nurse, a Nurse Director, Associate Director of Pediatric Surgery and Anesthesia, Divisional Director of Nursing Services…worn so many hats. He also works per diem at the state prison in Maine. This guy is a sweet as he is intelligent and after a breaking in period, Will gave into the idea of being cared for by someone other than Justin and I. They have become great buddies. It’s such a relief to know that Will is in good hands and happy while I’m gone for my shifts.

Thank you for following along. We are grateful for the friends and family who embrace our journey with us and continually add support along the way.


CHOP Update: Fall 2018

Waiting in the warm sunshine for our next appointment.

It has been ten weeks since we started Baricitinib and we had another follow-up appointment at CHOP this week. We started the day with lab work, then met with the neurologist to review his labs and discuss how Will has been doing since our last visit.

Since Will started Baricitinib we have noticed the following changes:
*He can hold his head up longer than he could before starting the drug.
*His trunk strength has improved, and he can maintain an upright posture when straddling our legs for longer periods of time.
*He has become more vocal: think tiny dinosaur…he is not babbling yet, maybe someday. The neurologist says that vocalizing is the precursor to babbling. We all wonder what his voice would sound like.
*He is easier to console, less irritable, and generally happier.
*We think he is bringing his hands to his mouth more often, which has been tough because he bites himself.
*He is chewing and swallowing better than he was, with a noticeable decrease  in gagging on fluids and medicines.
*He is demonstrating reciprocal movements in his legs when assisted to standing and also on his hands and knees. The neurologists and research team is so excited to see this too.

Physical Therapies:
Our team at CHOP recommended custom orthoses and a TLSO braces to use for therapy sessions. In addition to this, we have tried some medications to address the dystonia in Will’s arms and legs. Botox was given on two different occasions but did not seem to make a difference in Will’s tone. We moved onto baclofen, an oral medication but he did not tolerate it at all. He lost his spark and wasn’t eating meals because he couldn’t hold his head up. We have moved onto gabapentin. Gabapentin, like baclofen, has been a drug we are titrating to get to the desired dose. So far, the gabapentin has not made any difference in Will’s tone.

Sleeping (or lack thereof):
Will hasn’t slept through the night in about six weeks. We are a mess, exhausted. No sleep, no energy for exercise, less patience, etc. It’s ugly. We aren’t sure why he isn’t sleeping, but I know that swimming made a huge difference in Will’s sleep cycles. Six weeks ago when we were regularly crashing our friend’s pool, he was sleeping through the night. Could that be all it is, does he just need to move his body? Good grief! Our deck is near completion, and the hot tub is going to be placed in the next week or two. We need to have an electrician do his thing so we can be up and running.

Therapy Pool:
We couldn’t afford to add the pool this summer and have big dreams about what that might be like for Will and the other kids, but it’s expensive and may take another year or more to save. Glamour Pools has an above ground pool with a sunbathers bench option that would be great for Will’s physical disabilities. To sit him in a chair in a shallow area before moving to the deeper water would be more advantageous. We have the sweetest friends’ who give us the open invitation to their beautiful pools; we are very fortunate to have such amazing support.

Baxter loved his human kids

Many of our friends know that we lost our beloved dog Baxter to lymphoma. A huge presence is lost in our home. Every day one of my children say, ‘I miss Baxter.’ Hunter sleeps with the blanket we covered him with while he was sick. My children will never forget the love they have for Baxter. I miss walking into the kitchen and seeing him sprawled out on the floor, watching me with his big brown eyes. I also miss seeing Mia on the floor with him. She always took Will to him and played. Will loved his long-haired friend.

No escaping work

Daddy works during our trips to Philadelphia. He isn’t used to being away from his construction work as often as we have been, the stress wears on him but he tries to juggle it all as best as he can. Will offers a smile as we wait for dad to finish his phone call.

Looking forward:
Our next trip to CHOP is January 8th. We will be there for two days and then fly home. At this visit, we will have labs drawn, see the doctor, and then have research visits with PT, OT, and neurobehavioral psychologists to track Will’s progress on the medication.

We appreciate the GoFundMe gifts, cards, help with the pets and kids so much. PALS pilots fly us to Philadelphia and that makes such a difference for us; we couldn’t afford to go to PA as often as we do without them. Not only does PALS give us the gift of transportation, but it helps Will stay healthy. The germs Will would encounter by flying commercially would undoubtedly impact his health. The monies received from our fundraising helped us with the hotel fees, meals, and Uber rides while we were in Philadelphia. We used all of the donated money for the trip in July, August, and this week. That’s a lot of money in a short amount of time. Having a child with special medical needs is very costly. I just remembered a nice gesture: the night we arrived in Philadelphia we went to the restaurant in our hotel. Our waiter asked what brought us to the city. When we said we were visiting for a medical appointment at CHOP, he apologized and wished us well. At the end of our meal, he brought us a paper bag and said he wanted to send us on our way with some fresh baked cookies. Things like that make me sad and happy all at the same time. Justin ate all the cookies (ok, maybe all but a bite). I ate the lonely chocolate cupcake.

“When I die, I want to know that I helped all the people I could with the time that I had.” J.P.
Arguably the most beautiful person I have met during my life.

CHOP Visit #3

Headed to CHOP with PALS
Our flight home from CHOP with PALS
Will loves strolling through the city!

Leukodystrophy Center of Excellence (LCE) at CHOP

We met with six specialists during our visit to the Leukodystrophy Center of Excellence (LCE). First, we met with Dr. Goldstein, program director of the Metabolic Program. We reviewed Will’s genetics, including his mitochondrial tests and extensively reviewed Justin and my medical family history. Will and I share some mitochondrial similarities (mutations), but it has been decided that these findings are not likely to be causing Will’s symptoms.

Next, we met with Dr. Katz. She is the LCE rehab doctor, and we meet with her every time we visit CHOP for an appointment. We discussed Will’s tone management (dystonia and central hypotonia) as well as his sleep habits, and much more. She is the doctor who would inject Botox into Will’s muscles if we were to have that done at CHOP. For now, we will have Will’s Botox administered locally. We discussed some medicines for Will’s dystonia if the Botox wasn’t as helpful as we hope it will be. We will wait and see…

Dr. Katz works closely with PT and OT, and they usually come in at the end of her time with Will. They are a very enthusiastic bunch and win the kiddo over within moments. What we have noticed is that the entire team is energetic, motivated, and full of ideas. We showed them photographs of what we currently use for seating at home, and they made recommendations for equipment that might be helpful in the future. Will had Botox injected on Friday and the team gave recommendations about PT and OT sessions once he had the treatment. They were adamant about Will receiving intensive therapy twice a week for six weeks, on top of his currently scheduled visit from home health. We were excited to hear that they recommended intensive treatment because we have felt that Will needs more skilled therapy, especially once we get those muscles more relaxed. We also felt dread because it has been surprisingly difficult to find pediatric therapies close to home. We had a brief ‘couple’ moment after these three specialists left the room and Justin looked at me and said, ‘this seems like a lot to take on.’ Maybe it was the day, but I quickly responded, ‘it’s a lot, but if we take one thing at a time and put the pieces in place, it is manageable.’ We need to do this for Will, and I thought, ‘iWill find someone to help me.’

The fifth visit was Dr. Jaffe, a developmental pediatrician. I thought that I had seen it all, but then I was exposed to a developmental pediatrian…these humans are super cool. She is a breath of fresh air, and the little man digs her. She is the one who talks to us about growing, eating, pooping, skin, and everything in between. Everyone wants to see Will in a different place on the growth chart. I have felt that Will’s height and weight, though small, is close to where he would be if he were neurotypical. That said, we will follow her recommendations and try to feed him high-calorie shakes and keep offering him the foods we know are packed full of healthy calories and fats.

Dr. Vanderver, the director of the Leukodystrophy program, examined Will next. We travel to CHOP specifically to see her, but again, the rest of the team is excellent. Initially, I didn’t realize that when you go to CHOP to be seen by Dr. V, you see the whole team. It makes a lot of sense, and I am so grateful for this approach. They treat the whole child and give their opinions as a team. Dr. V reviewed everyone’s notes, she examined Will, and then we talked about where we are: undiagnosed. Her advice is to come back to CHOP for an MRI and another lumbar puncture under the supervision of a neuroradiologist who is an expert in neuro-inflammatory conditions. We will travel to CHOP in a few weeks; Will is planning to see Dr. Banwell for an initial office visit, then the next day have his MRI and LP under sedation. The third day we will be seen by the team again and review the imaging. The other specialists will see Will, and we will follow up on how the recommendations are going in Maine.

Will’s Brain:
My ongoing concern about Will’s condition has always been about the inflammation in his brain. It seems that his symptoms wax and wane and there is no thought to treat this while we sort things out. We have used steroids twice for worsening encephalopathy, but CHOP recommended that we hold off on using steroids a little longer while we do more testing. What keeps me awake is that this inflammatory response is permanently affecting Will’s brain, and these effects seem to be the cause of Will’s global regression. He has lost almost everything at this point: purposeful movement, coordination, typical emotional responses, motor planning, etc. Will he eventually lose the ability to breathe on his own? I want to see someone offer to treat his inflammation, realizing that what is lost may never return. The devil tells me I should have driven him to Boston exactly one year ago when his symptoms began to peak; perhaps we would have gotten ahead of the disastrous effects of the inflammation in his brain. Would they have done the testing we waited months for? Would they have tried a steroid burst or IVIG in the setting of acute encephalopathy? I know these thoughts aren’t productive, but as a grieving mother, they are mine, and profoundly haunting. What’s done is done, and I know that Will’s treatment in Philadelphia is exactly what he needs. Will the next tests give us more information and enough evidence to try medications? We will find out in May.

What’s happening right now?
Will has had Botox and I am looking for someone to do PT and OT with him. He needs to be worked hard (it’s relative) and often by therapists. I can’t drive to Saco, but I’m looking for some help finding a therapist to assist us with Will, working his opposing muscle groups now that Botox has been administered.

We couldn’t do all of this without the support from PALS and their mission angels. The friends and family who care for our kids and pets while we are away gives us peace of mind. We all want to hear that there is some way to help Will get better, but what we have is a plan to give him the best care going forward. With all of the love and support you give us, you are part of Will’s expert team too. #WeWill


Clean Up!

Feeding Supplies

We can all agree that this has been a really tough flu season. As an ER nurse I have swabbed multiple patients and not many have been negative. That’s a lot of flu. I am a big fan of bleach, but when it comes to my children’s personal items, I choose to use a more gentle approach.

Breastmilk can leave an oily residue inside bottles and pump parts. Again, I don’t use products like regular dish soap because they are full of chemicals and leave a soapy odor. In our home, we use Dapple for our bottles, toys, pump parts, and plastic wear. The sanitizing wipes are great for that quick clean at the end of the day.

Our son has a rare neurological condition, but he has been the healthiest person in the house. We attribute this to consistent hand washing, keeping those with cold symptoms at a distance, and vaccines. A respiratory illness like the flu can be deadly for a person with severe neurological symptoms like central hypotonia.

Give Dapple a try, they are affordable and if you’re running low, Amazon Prime will have you stocked and ready for business in the next two days.

Update: Winter 2018

Will hasn’t had a follow up with the Leukodystrophy team since October, 2017. We were scheduled to see his team and also a new doctor from metabolic medicine on February 1st, but Will developed a fever and could not be seen at CHOP unless he was fever free for 24-hours.

We have had some test results since October, but none of them have been informative. We still do not have a genetic or other reason for why Will developed this neurological condition. We are scheduled to travel to CHOP the first week of April and will keep our fingers crossed (and our hands washed) that Will is healthy and prepared for travel. While I’m beginning to lose hope for a diagnosis, we are able to reframe and adapt to our life with this special boy by taking one week at a time.

Our community is generous and caring. Without prompting, we have had the most delicious mac n’ cheese, homemade baked beans, chili, guacamole, pot pies, lasagna, salads, brownies, and cakes dropped off over the past four months. We have had family and friends pick up or take kids when we need rides for them. Most importantly, we rely on family to take the older kids when we need time to be husband and wife. We are all stronger because of this unexpected journey, and it’s because we have all the right people who surround us with love and support.

The Little Big Family

Last night we were talking about marriage, relationships, and the challenges of raising kids in a technology-heavy time. While I could trail off and carry on about our feelings concerning children who have unfettered access to the internet and gaming world, I want to write about my favorite topic: Us!

Last night we were talking about our relationship and marriage. We discussed how Will’s special needs add an unexpected challenge for us. Without pause, I said, ‘well, we met, fell in love immediately, merged our families, and married within nine months. Not one moment of that felt like hard work.’ When we met, we knew that being together was the only way we were going to live the rest of our days. We wanted to be married. We wanted a ‘together baby.’ We promised one another that nothing would stand in our way. Well, we attained all of our goals and feel incredibly grateful to be together. We have our blended family, dogs, and our together baby. We didn’t expect the stress that comes with managing a challenging disability, but we can get through it together. Stress and fatigue can bring out the ugly bear in us. However, we have ‘Us.’ We have the union of two families and a beautiful ‘together boy’ who was meant for us.

This is Us: The Little Big Family with one important message:
We are exactly where we are meant to be. Justin and Melissa will take on every challenge that comes along. I may not be able to convince Justin to stay away from soda forever, but I know when he opens his eyes in the morning, the most important people are his family. He also wants whoopie pies, and his feet rubbed. Anyway, Happy Valentine’s Day from The Litte Big Family to yours.

The Unseen Bureaucratic Challenge: Obtaining resources for your special needs child

DHHS Office

July 7th, 2017
Will’s 1st birthday we were driving home from a Gastroenterologist’s office after a nutrition consult. Will’s neurological condition had worsened over the course of eight weeks, and we were afraid that he would decompensate further and not eat enough to thrive. As we were driving home, Will’s neurologist called and asked to be placed on speakerphone so my husband and I could both hear what he had to say. In the next few moments, we learned that Will had been given a diagnosis of Leukodystrophy and they presumed he had Aicardi-Goutieres Syndrome (AGS) based on findings in his Cerebral Spinal Fluid (an extraordinarily high neopterin level). Neopterin is a biomarker that is present in the setting of immune system activation. Along with high neopterin levels in his CSF, they reviewed his MRI again, which was read as normal two months prior. After reviewing his MRI again, the neuroradiologist concluded that Will had mineralization in the white matter of his brain. With the high Neopterin levels and calcifications in his basal ganglia, a clinical diagnosis of AGS seemed most appropriate.  It felt especially cruel to get such difficult news on Will’s 1st birthday. Some have said, ‘once you know, you’ll feel better.’ I didn’t feel better. In fact, I doubted the diagnosis. AGS is a genetic syndrome, and the genetic changes are found on one of seven genes. I remember thinking, ‘How can this be? He is our love baby.’ I still feel this way.

A week later we met Will’s neurologist to discuss the diagnosis. I remember not talking about the diagnosis because it took my breath away. A genetic test was pending, and we were told that AGS was an autosomal recessive syndrome passed onto Will from my husband and I. I asked, ‘what happens when Will’s genetic test does not show the gene changes associated with AGS?’ The doctor looked at me sympathetically and softly said, ‘I think we will, but if for some reason we don’t see the genetic markers for AGS, we will look for mimics of AGS.’ We asked, ‘what would you do if this was your child?’ He replied, ‘I would take him to the experts, and in this case, they are in Philadelphia at CHOP.’ Our neurologist had reached out to an expert at CHOP who runs the Leukodystrophy clinic and had information about their program, specifically the compassionate use program at CHOP. There is currently a compassionate use trial for AGS kids at CHOP and they have seen clinical improvements with the drug they have been using. To be included in the trial, there is a list of criteria each patient needs to meet. There has to be genetic confirmation of AGS to be included in the study. As awful as we felt, we envisioned a hand reaching to us from Philadelphia. We thought, ‘this won’t cure him, but it could help him in some ways.’ A week later the genetic test results came back, and his Whole Exome Sequence (WES) was normal. No sign of AGS, and a denial from CHOPs compassionate use trial head researcher.

Fast forward to September (two months after Will’s provisional diagnosis of AGS), and we were meeting the Leukodystrophy team at Clinic Day in Philadelphia. We met with a renowned pediatric neurologist, Dr. Vanderver, and her team. We had consultations with a developmental pediatrician, nutritionist, physical and occupational therapists, and a rehabilitation doctor. The therapists recommended many pieces of adaptive equipment. Some things I had heard of, some I had not. Over the next three months, we were managing flares in Will’s condition; he was hospitalized, traveled back to CHOP for follow up care, and focused on Will’s nutrition. Will was growing longer, and I began feeling like we would need options for safe seating (supportive chairs, adaptive feeding chairs, adaptive strollers, a stander, etc.). We also lost our childcare because Will became too much to care for in a traditional daycare setting. Will wants to be carried and cuddled while he is awake. His favorite place is snuggled against our chest, heart-to-heart. My husband and I rearranged our work schedules, and with the support of our colleagues, we have managed to piece things together week-to-week. I have been working most weekends and one day a week, and my husband works two full-time jobs around my schedule. We also have five children and manage their interests simultaneously. Children have been getting rides from family and friends, waiting patiently for their turns, and learning that there are some things that we just cannot do. Everyone is adapting.

We are fortunate to have good insurance. Our insurance company is billing the in-network rate for our specialists in Philadelphia because there isn’t anyone in Maine who specializes in Leukodystrophy. One of the things I did not realize is that even though we have great insurance, there will be equipment and resources that are not covered. In Maine, people who do not have insurance or have disabilities can apply for MaineCare. Without MaineCare, it isn’t possible to access many of the services you rely on when faced with a complex medical condition; specifically in-home services. As we wrestled with the reality of our child being disabled, we didn’t realize that we should be applying for MaineCare (as soon as possible). It had been ten months since we first saw our neurologist, we were already behind the eight ball. We were adapting to our new life and were completely overwhelmed with grief and shock. I was (am still) looking for a treatable cause. I was slowly adapting to his new physical and cognitive limitations; not at all ready to accept this was the fate of our boy, completely disabled.

Late September 2017:
Applying for MaineCare
What a cumbersome process. We have a family friend who is familiar with the forms, and she assisted us step-by-step. We faxed hundreds of pages to DHHS so they could review our application and financial documents. They often misplaced things that were sent and faxed to their office. More than once we called them, or they called us looking for additional information. This went on over the course of several weeks. Two months later the phone call from DHHS came: ‘Hi, this is Michelle, I want to let you know that we have deemed William completely disabled as of August 1st, 2016.’ That wasn’t something I could repeat without feeling constriction in my throat and chest that made it too difficult to speak. We should be excited at this point, we have moved through the MaineCare process. It feels awful. I’m not excited; I feel immense pain. At this point, MaineCare has been denied because we both work and do not meet the financial requirements for approval. Once denied access to MaineCare, families can apply for Katie Beckett, another way to access resources through MaineCare.

January 2017:
The next step, applying for Katie Beckett
To get this benefit we needed to complete a Goold Assessment at DHHS. The State of Maine requires both a financial and functional assessment to determine an individual’s eligibility for most In-Home Services. The Goold assessment helps individuals and families understand what services are available to them through MaineCare.

If a parent or guardian works and has insurance, they are not eligible for MaineCare assistance. However, all of the services provided by the many mental health agencies are only available to those whose children receive the MaineCare benefit. Some families have gone years without help or services because they didn’t know they existed or they didn’t know there was a way for the child to become eligible. There is an answer, and many families can qualify for services paid by MaineCare through the Katie Beckett Option. The Katie Beckett Option is a MaineCare option for children with serious health conditions. It is one of the many ways a child can get MaineCare. Katie Beckett has a monthly premium, just like our primary insurance. This secondary insurance will cover co-pays and hopefully, pick up where our insurance leaves off. We had our Goold Assessment at DHHS January 3rd, and the nurse conducting the assessment said we would hear from our contact within DHHS about our premium within a week or two. We heard nothing from DHHS despite calling and leaving messages twice a week for almost four weeks. At this point, we have several thousand dollars paid to medical doctors and hospitals and have been denied equipment and nursing services for our sweet boy. We have been anxious to welcome home nursing care into Will’s life because, with the right caregiver, my husband and I can leave him in loving arms and go to work.

To get coverage through the MaineCare Katie Beckett option:
•You must fill out a MaineCare application;
•Your child must be 18 or younger; and
•Your child must meet financial and medical rules.
YOU must also have the stamina of a Pronghorn Antelope because the ball will be dropped so many times during the process.


  • I assumed that anyone who has a significant medical disability would encounter the initial steps of acquiring these services with the aid of their primary care provider. That was incorrect.
  • I assumed that Child Development Services (CDS) would interject and get the MaineCare Labrinth started with our family; that was also incorrect. What I learned is that the average person has no idea where to begin with this process.

The reality of the situation is that some people have to seek out case management services on their own. Or,  someone recommends applying for MaineCare and they go home and search the internet. Some people post a general question on Facebook to a private group; something along the lines of, ‘What is MaineCare and how do I get it? Or this, ‘I’m told I need MaineCare but none of the doctors have mentioned it.’ Someone may even mention that they should obtain a case manager. How do you do that??

People who are involved or work with individuals in mental health or other medical services recommend case management services to the patients, and it’s up to the patient to agree with receiving this help. There are people who have submitted their application (DHHS has 45 days to make their determination of approval/denial), and they hear nothing from DHHS about their decision. I have heard stories about people who didn’t realize that if DHHS doesn’t make their determination on time, that they automatically receive temporary benefits until a decision is made. There are some people who didn’t realize they had received temporary coverage because they got lost in the system. It’s only when a case manager keeps track of ‘the clock’ that people get their coverage faster because DHHS is hounded by the case manager to complete their file.

Where things get lost in the land of DHHS:
DHHS Office of Family Independence (OFI) receives the application and has two days to process it into their system and then sends it forward to the medical review team to determine disability. Once the DHHS OFI confirms receipt of the application, the 45-day clock begins. The Medical Review Team (MRT) sends medical requests to all providers involved in the individuals care. Once they have the file completed, they send it to an independent medical reviewer (medical doctor or psychiatrist) to determine disability. Once the MRT receives the determination from the reviewer, they immediately acknowledge it in the system and send the determination back to DHHS OFI. I have learned that the two systems (MRT and DHHS OFI) do not interact and that is where the biggest GAP is. There have been instances where the MRT has approved the individual for disability, but DHHS has sent out a denial letter; completely erroneous and leaving people desperate for care and resources in limbo.

February 2nd, 2018
Where we are in the process: almost 5 months after getting started with our MaineCare application.
We talked with DHHS yesterday, and our point person gave us information about our premium for Katie Beckett. She is ‘pushing the information through the system’ and we should receive our paperwork so we can begin paying our premiums and using the benefit as secondary insurance. To get reimbursed for out-of-pocket expenses and the insurance co-pays we have already paid, we need to contact every provider and have them submit Will’s MaineCare information to their billing department; they would get reimbursed from MaineCare once the bills are processed. Once they are reimbursed, the providers would then reimburse us. We would need to hire someone for this process alone; I can barely keep groceries in the house; let alone find time to shuffle all this paperwork. Going forward, we will have the Katie Beckett benefit, and this will help us with future co-pays and out-of-pocket expenses.

Don’t complain if you can’t recommend a solution:

When given a disabling diagnosis it would be helpful for the primary provider to immediately connect families and patients with a case manager who can begin the process of applying for benefits. In my opinion, this should be done at the initial encounter because we are doing patients a disservice by letting this fall by the wayside. It’s not enough to have follow-up appointments with specialists and not have this piece in place. Specialists are charging between $350-$600 per visit; some thought should go into the social, emotional, and medical wellbeing of patients and their families. Assigned case managers should be following up with patients while the approval process is underway. Even with my effort and the effort of our family friend, it was an overextended process that went on for months on end.

We can and should do better for our families in crisis.


Adaptive Equipment: AFOs and Standers

AFOs from Maine Orthotics

Will has dystonia affecting his extremities. Because of his strong, involuntary tone, he needs ankle-foot orthotics (AFOs) to hold his feet in a flat position (dorsiflexion), so he can bear weight on flat feet. When standing, or held upright, he points his toes downward (plantar flexion) and cannot stand. Will’s condition will prevent him from walking and standing on his own, so we need to adapt to his limitations and support him into those positions.

In order for Will to stand in his ‘stander,’ he needs to wear his AFOs. Will needs to stand at least twice a day for 20 or more minutes each time (our current goal), so his bones and muscles develop normally. Check out these cute shoes from Old Navy! I love a good deal, and these were only $7.99! Winning!

After Will has his AFOs on, he is able to use a stander. There are prone standers and supine standers. We are trialing these standers so we can assess which type of stander will be best for Will. To obtain durable medical equipment (DME) you need a letter written by a therapist demonstrating the medical need for the piece of equipment you are requesting. A physician has to sign the letter written by the therapist, then it is sent to the insurance company for review.  If the insurance company approves our request, the medical supply company will order the piece of equipment from their vendor. Once ordered, the equipment is delivered to the medical supply company (this takes a few weeks) and they use the patient’s measurements to set up the equipment. It can take 3-6 months to go through this process.

Prone Stander
Supine Stander