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?

What's that red stuff all over the ground this time of year?

If you're anything like me, you often wonder about nature around you. (If not, don't even tell me; I'm not sure we can be friends.) Have you ever wondered what that red plant material is that's dotted all over the ground in early spring? If you live in a climate like Michigan's and it's windy where you live today, head outside right now and take a look.

What you are seeing are some of the earliest flowers of spring, the flowers of Acer rubrum and Acer saccharinum. Acer rubrum = red maple. Acer saccharinum = silver maple.

To give you an idea of the timing of the annual red and silver maple flower drops, where I live the crocus are nearly done flowering. The daffodils have been going strong several days, my forsythia just a couple days and today I noticed the first magnolia just starting to break bud.

Red maple flower.

Together with my in-laws, my family is a small, commercial producer of pure maple syrup. Knowing about the Acer species is part of our business. Each year, we invite students to visit us in the maple woods for tours. I always ask each group of visitors if they think maple trees have flowers. Young children usually guess no. Only about a third of the older students and adults realize that maple trees must flower. Very few can describe a maple flower to me — maybe only a few people in the seven years we've been holding formal educational tours.

Of course the answer is yes, maple trees do indeed flower. The flowers are tiny compared to the massive trees and aren't very noticeable until they fall to the ground. While red and silver maple flowers are red, flowers of the sugar maple we primarily tap for syrup are a bright, almost lime green. That may start to sound familiar to you now. You've probably noticed clumps of red or green maple flowers lying on your car hood or sidewalk in spring, or blown to the edge of the driveway. Reds and silvers are the first to flower.

Silver maple flowers.

Whether the maples are red, sugar, black, Norway, silver or another species, all flower so they can then fruit. The fruit of the maple tree is what I grew up calling a whirlygig or helicopter as a kid. Remember how delightful it was to toss a handful of the dry helicopters into the air and watch them twist and twirl toward the earth? That whirling and twirling is the maple seed dispersal system, sending the seeds inside as far from the mother tree as possible.

To a botanist, those helicopters are actually called keys or samara. (I won't judge if you still want to call them helicopters.) Technically, the seed is only the oblong brown seed coat and its contents at the heavy end of the double samara. The whole unit is the maple tree's fruiting body, but again, you can refer to the whole thing a seed we'll know what you mean.

Not-yet-flowered buds of a sugar maple
(Acer saccharum) in our front yard.

As nature begins to wake up from the long winter, it's satisfying to look down and notice the details — the greening grass at our feet, the emerging wild leeks, the narcissus and tulips in our flowerbeds. I also encourage you to look up. See the tree buds swelling, various species beginning to flower, and the red and silver maples just beginning to produce their fruit now that they're dropping their diminutive flowers.

Hey, Michigan! Burdening homeschoolers with more government bureaucracy doesn't stop child murder.

This morning, two Detroit legislators proposed a bill that would add layers of bureaucracy on the shoulders of Michigan's homeschooling families. Why? Because a crazed criminal killed her two children and stuffed them in the freezer.

What on earth does that have to do with homeschooling? It really doesn't. This is a knee-jerk reaction to a heinous murder because the mother said "homeschooling" as one of her many lies when somebody asked where the children were. (She also said they weren't home or had gone to live with relatives, and no one is proposing a bill to regulate children who legitimately leave their house with a friend or go stay with Grandma.)

Instead of adding another layer of costly government red tape to homeschooling families who are already choosing the more challenging path because they are that committed to their children, how about we solve the actual problem of a severely psychiatrically disturbed mother who murdered her kids? With all the systems already in place that were supposed to protect these children, but failed, why are we using homeschooled kids like mine as the scapegoat? If you are inclined to think we do need to further regulate homeschooling because of what happened to these two children— or for any other reason — consider this:

1. The mother in this case, Mitchell Blair, was investigated twice before by CPS for abusing the same children she eventually killed. How did that government intervention save her children? Should we add additional bureaucracy or fix systems already in place?

2. The children were enrolled in public school until they were murdered, or shortly before. The proposed legislation would ask existing school districts to not only care for enrolled children, but also police homeschoolers. How did public school oversight save these children?

3. Stoni Blair's teacher did call authorities when the girl stopped coming to school, yet no one did even checked into it (and not because of homeschooling either, they failed to act period.) How did this teacher's effort save these children?

4. We all know this mother was not actually homeschooling the [deceased] children, nor did she ever intend to. Had she not been able to use homeschooling as one of her multiple lies, would she have spared the children's lives? Or would she have just come up with a different lie?

5. Sadly, this is the third case in the last several years in Michigan in which a parent lied and said they were homeschooling and, instead, murdered their child. Four dead children is four too many. Are homeschooling parents more likely to murder their children in cold blood? Or are murderous criminals more likely to lie? Would murderers give up and spare their children if they didn't have the ability to use homeschooling as their lie, or would they skip town, go truant or use other lies? How many children enrolled in public school in Michigan in the last several years have been murdered at the hands of their own parents? How did public schooling save those children's lives? (My casual observation of the news tells me it is a significantly higher percentage of children killed while enrolled in public school then murdered while their parents used homeschooling is a lie. It would be interesting/horrifying to research.)

6. Are parents who intend to break existing Michigan homeschool law likely to comply with an additional layer of requirements? Or are the parents who would comply with additional laws people like me whose children are not the at-risk ones you are looking for?

7. One report said the two recently murdered children were receiving Medicaid and food assistance benefits for the last two years while their bodies were in their mother's freezer. How did involvement in these government programs, which often require check-ins and medical visits that clearly didn't happen, save these children? Would additional homeschool regulations requiring doctor check-ins get criminal parents to comply?

8. One article revealed the mother told some of her neighbors that she had killed her children. Not one of them stepped forward or told authorities. What role does this play in saving children's lives?

9. The children's grandfather attended the press conference where this proposed legislation was announced. He stood in support of additional regulation on homeschoolers. My heart aches for him, yet I cannot understand his reasoning here. Where was he when his grandchildren were missing for two years? If you are a parent, would your parents or in-laws stand idly by if you lied to them about your children's whereabouts for two years? If you are a grandparent, would you except a myriad of thinly veiled lies if you didn't see your grandkids for two years? Or are there deeper issues here?

10. In the past few days, I have heard a couple people say they know a homeschooling family where the children are not actually learning or doing anything. That makes me sad. Do you know any children enrolled in public school who fall through the cracks and are graduated without reading proficiency, don't do homework or get assistance from parents at home, or drop out? Is it possible the few bad seed parents who pretend they'll homeschool are the same ones who would be miserably failing their children in a public school environment? If we can't get that minority of children in check when they are under government scrutiny already, do we really expect additional laws on homeschoolers would have the intended outcome?

11. Where would money come from to pay for additional government bureaucracy to regulate homeschoolers? Would we raise taxes? Take from education funds that people say are already not enough?

12. One person recently asked if homeschoolers like me have nothing to hide, why would we object to additional government scrutiny? I want people to know that homeschoolers aren't afraid reporting on their children's progress. We're glad to tell you what our children are learning if you are truly interested. Some of us blog about it, share our educational experiences in Facebook posts, and have our children participate in science fairs and presentation nights to show the world what they are learning. The real question is, would government red tape improve the quality of our homeschooling or would it take precious time away from educating our children if we are required to submit additional reports, take our children to additional visits and wait for approval of our curricula?

13. If you think children need to be monitored because parents can't be trusted, what about the children ages 0–5 who aren't yet in school? They, too, are sometimes abused and murdered by their own parents, which is already illegal and already has a child protection system in place to try to stop it. Do we add a layer of bureaucracy on top of all parents because a tiny minority are criminals? Or is there a better way, like neighbors, family and friends looking out for each other and repairing existing systems that sometimes fail to protect children?

14. What laws are already in place to make murder and child abuse illegal? How is it that laws against murder and abuse didn't save these children, but we're supposed to think laws harsher laws against homeschoolers would save have saved these children?

15. Is it possible we are so deeply troubled as Michiganders by what happened to these children that we are thrashing about, looking for answers, ready to cling onto the slightest bit of hope that we can do something to stop cold-blooded child murders? Do we really want to punish the wrong families because we feel desperate and hurt by the loss of these two children?

Believe me, stopping child abuse is so important to me that it has become a key part of my calling as a Christian and as a mother. I would do just about anything if I thought it would save a child from abuse or murder. My husband and I adopted two children out of the foster care system whose lives were irreparably damaged by their birthparents. We did this with open hearts even though it has rocked our family to the core and added stress that's nearly impossible to adequately describe. When I say I would do anything to save a child, I mean it. But regulating homeschoolers? That's not the answer.

16. As those who know me are well aware, I am pro-homeschooling. I am also pro-public schooling, pro-online schooling and pro-private schooling. I am pro-school choice. I choose homeschooling for two of my children and public schooling for two of my children. I am grateful all these options are available. Do we really want to limit educational options, or do we want to solve the real problem of child abuse and murder?

Instead of throwing a tea cup of water on a forest fire (not to mention the wrong fire), how about we get to the real root of the problem? Instead of adding a whole new layer of bureaucracy over top of homeschooling families whose children score, on average, higher than publicly school children in all measures, how about we work on solutions for mental illness? Child abuse? The child protection system? Detroit in general? Poverty? Societal ills that allow people to turn their heads when children are hurt?

Disposable swim diapers for special needs

Our family loves swimming. Although I used to sew my own cloth diapers and cloth swim covers, once I had an infant and a toddler with special needs we completely abandoned cloth and switched entirely to disposables. When my sons were still small, it was easy to find Huggies Little Swimmers or Pampers Splashers for swimming. As they outgrew those by 45 pounds at about 4 and 5 years old, I searched and searched for an affordable disposable alternative.

I've posted on special needs message boards and nobody has a great solution other than cloth covers. I ended up recently ordering Swimmates by Tena from Amazon.com. That was the best price I found and shipping was free. I ordered the smallest pack to try them out, which came out to 72 cents each. If I like them, I will order a case so they'll be cheaper.

My sons do get their pull-ups and diapers covered by Medicaid, but it does not cover swim diapers even though therapeutic swimming is part of their school program.

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.