Why Michigan families need special needs savings plans

Michigan State Rep. Anthony Forlini recently introduced legislation, House Bill 4543, that will allow the state to set up a framework so citizens with special needs can save money in special accounts. This is a big deal for my family and I hope others will join me in encouraging our legislators to pass Michigan's plan for the federal ABLE (Achieving a Better Life Experience) Act of 2014.

To explain what this means by example, last year my husband and I helped our 6-year-old son with classic autism and cognitive impairment start a tradition of showing a pen of chickens at the county fair. He sold them at auction for around $150, just like his big sisters who experience hard work and responsibility by raising, showing and selling livestock and poultry. We pay for everything our son might need or want, so that money went into his small savings account at the bank. If he raises a few fair chickens each year he is in 4-H and no more, he will have the maximum amount of money allowed before a person becomes ineligible for Supplemental Security Income (disability) support, Medicaid and other federal programs based on means. About $2,000 in chicken money will max him out.

While our family is doing everything we can to help our son learn and grow to become as independent as possible, the reality is he will probably need disability support sometime in the future — whether that is when he becomes an adult or when we are gone. That means any money in the bank given to him by grandparents as birthday gifts or that he might earn during childhood, such as by raising pigs, selling eggs or helping in the family maple syrup business, would either be forfeited or deem him ineligible for disability support. We want to encourage our son to develop simple job skills, so being able to work at supervised tasks and earn a little bit of money is important to his development. And if you've met my little guy even briefly, you know he loves his farm animals!

Of course a person with permanent disabilities such as my son's is exactly why this program exists, so it makes sense to make it accessible.

"The King will reply, 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.'" —Matthew 25:40

It's true that even before the federal ABLE Act passed last year, a family with means has been able to hire an attorney to set up a special needs trust, which costs $500+ in legal fees in my area. Some families have found ways to funnel funds to other places to get around the law.

Now that the federal ABLE Act passed last year, all people with special needs are allowed to keep their own money in their own names in special tax-free savings accounts that won't be taken away from them or counted against their eligibility to receive federal disability benefits. However, it's up to each state to set up a system for its citizens to participate.

Michigan offers tax-free 529 college savings plans for families to set aside money so students can attend college. My 6-year-old chicken-showing son, as well as his little brother who is also seriously affected by disabilities, won't likely be able to attend college. The boys will, however, have long-term needs. Families like mine who can help their children with special needs set aside some money for the future should be able to do so without being penalized. A Michigan special needs savings plan will make that happen.

Thank you, Rep. Forlini and cosponsoring Reps. Jenkins, Irwin, Victory, Poleski, Lucido, Howrylak, Miller, Liberati, Lane, LaVoy, Geiss, Hooker and Courser for supporting Michigan's special citizens through this bipartisan legislation. Thank you Lt. Gov. Brian Calley for testifying in support of it today. Won't you contact your Michigan senator and representative to let them know you support Michigan's implementation of the ABLE Act, too?

How I keep paperless files for my kids with special needs

If you have a child with special needs, you know that on top of caring for your child comes managing a mountain of paperwork. At the first support group I attended for parents of kids with special needs, an experienced parent urged us all to keep records. Her adult son needed a medication adjustment and she couldn't remember exactly which medications had worked in the past and at which doses. I took her advice and it has already paid dividends.

The amount of paperwork that follows each of my sons is astounding. There are Individualized Education Plans (IEPs) from school, medical test results, prescriptions, seizure action plans, reports from doctors, letters and notes from therapists, insurance forms and so much more. Because my sons came to us through foster care and adoption, the paperwork pile is even deeper — or it would be if I hadn't hit on a digital organization system that works for me. Except for the few documents that must be kept as originals such as birth certificates and Social Security cards, I keep nearly all files on my computer and backed up in the cloud. Here's how.

1. As much as possible, I request information be sent to me in PDF form by email so physical papers never have to hit my mailbox. However, most of my children's care providers don't have systems for electronically sharing documents that are secure enough to comply with HIPAA (Health Insurance Portability and Accountability Act, which protects the confidentiality of health information). That means I'm usually stuck with paper.

2. As soon as paperwork makes it into my home, I sometimes let it age on the kitchen counter for two to three months before I do anything else with it. I strongly recommend you skip this step.

3. I scan everything. I like the free DocScan app for my iPhone and iPad from IFUNPLAY. It's easy to use and can create PDF or JPEG documents. I like that I can scan wherever I am and don't need to sit at the computer and use the flatbed scanner.

4. I file my sons' paperwork in logical computer folders and subfolders, just as a would if I were filing them in a cabinet with fat hanging files and thinner manila folders.

• Each of my sons has a main folder with his name on it.
• From there, each has a set of category folders: Dentist, Legal, Medical, Mental Health, School, Diagnoses (named Autism, Cerebral Palsy, etc., which is where I file general information I learn about each diagnosis).
• Under each of these categories are subfolders.
  The Medical subfolders include: Health Insurance, Immunizations, Vision, Doctors (I have a folder for each doctor by last name).
  Mental Health subfolders (in my state, developmental disabilities are handled through the community mental health agencies) are: Person Centered Plans, Respite and Programs (listed by program name, such as Autism Center and Community Living Support).
  School subfolders include: Audiologist (because this is done at school), Behavior Intervention Plans, IEPs, Report Cards, School Nurse, Transportation and Teachers (each teacher has a folder by year).

5. I use the free Dropbox cloud service to store and back up all of my information. Instead of keeping things in the My Documents folder on my computer, I keep them directly in the Dropbox folder that was placed on my computer when I installed the program, which is easy to do. That way I don't need to drag my files anywhere to back them up, which I would probably forget to do.

If you would like to try Dropbox, you could sign up from this Dropbox referral link so we would both get some bonus space.

Later I'll share how I keep a running log of my sons' medications and changes made over the years.

This is what Sensory Processing Disorder looks like.

This is what Sensory Processing Disorder looks like. It's probably the least concerning on his long list of diagnoses, but when we can use it to our advantage to help him through his other hurts, we do. I had heard of kids who were so sensitive they couldn't stand seams on their socks or tags on their clothes, but I had never heard of hyposensitive kids — the exact opposite, who crave pressure and touch and sensations. They're the kids who are always crashing into things, always moving, always seeking more input — only his is to the extreme. He no longer bangs his own head (that was frightening to see), but still uses his teeth and fists and open hands to get pressure from other people, and of course hitting, biting and slapping don't go over well in a house full of people.

I was able to pull him out of an epic meltdown last night (Can we still call it epic when there are many in a day?) by using his sensory issues. Sometimes it doesn't work and some of us end up getting hurt. If I can catch him at just the right moment when he is able to signal to me that pressure will help him, it's always worth a try.

His signal last night was headbutting me in the side (while screaming and flailing and gnashing teeth), but I know from experience that it meant he needed pressure. Fortunately, this time none of the other kids were in the house. When you crash into your brother who has serious challenges of his own, it results in a smackdown. Because he had only crashed into me and I was somehow feeling particularly patient, it turned into soothing. This time anyway.

I pushed a big heavy Bumpidoodle pillow down onto him while doing what we call "cleaning your ears." We discovered a couple years ago that he loves getting his ears cleaned. More pressure. So now I ask him if he wants his ears cleaned and even if a Q-tip it is nowhere in sight, if he feels just so he will lay his head on my lap so I can firmly massage his ears. When I say firmly, I mean other kids would be indicating, "Ow! Stop, Mommy, you're hurting me!" But he likes it, and if I am not firm enough, he digs his skull into me to make it firmer. So I alternately squished down on the pillow and rubbed his scalp while "cleaning his ears." It's a delicate balance of giving him the pressure just where he needs it while not letting him feel like his movement is restricted because THAT TICKS HIM OFF. It's picking up his subtle cues to get it just right. If he moves an arm, that means he needs the pillow pushed down harder or heavy blankets stacked on top. If he starts to lift his head, the other ear needs massaging. It worked. This time.

What you can't see in the picture are the other pieces that had to happen just right for this to work. The butterfly movie playing in the DVD player — not too loud, because sounds ramp him up. Not too much action, or his body mirrors the action on TV. It was right at the metamorphosis scenes, which couldn't be more appropriate.

You can't see the sensory items he was hoarding in his arms under the big pillow. If they weren't there, everything else would have fallen apart. I call them sensory items because over his four years of life, we have finally figured out that he needs these items to feel right. Needs them. Like how you and I need air to breathe.

The things he needs all have something in common. He likes the feel of rubbery things, of plastic, of heavy paper, of adhesives. To you, it would look like he's holding onto a bunch of trash. I mean that literally, because he was holding onto a large black trash bag full of goodies pilfered from an afternoon visit to Grandma's and Grandpa's house. They get it, and let him fill his bag.

Inside his black trash bag was a white trash bag, a paper sack, an empty 2-liter of Diet Vernors, a big yellow punch ball covered in stickers and four aluminum pie tins on which his grandmother had obligingly drawn with a Sharpie the characters he requested (demanded?) — a horsie, a butterfly, a flower, another butterfly.

Everything was just so. And holding them under his heavy pillow, watching butterfly metamorphosis, getting his ears rubbed and his scalp massaged, allowed his brain to calm and his body to rest. For a few minutes. Until it was time to start over.