Special needs - death by car and what we can do about it

The Centers for Disease Control’s pedestrian injury page tells us that in 2012, "4,743 pedestrians were killed in traffic crashes in the United States, and another 76,000 pedestrians were injured….  Pedestrians are 1.5 times more likely than passenger vehicle occupants to be killed in a car crash on each trip…"

Some groups are more at risk than others. "Pedestrians ages 65 and older accounted for 20% of all pedestrian deaths and an estimated 9% of all pedestrians injured ...more than one in every five children between the ages of 5 and 15 who were killed in traffic crashes were pedestrians."

The CDC doesn’t collect statistics on ambulatory special needs adults, but if they did I suspect this would be the highest risk population. Special needs adults don’t drive, and they have to live where services and work are available. Getting to and from work by foot means more exposure to fast moving heavy metal objects guided by imperfect humans. Cognitive disabilities often means less awareness of high risk surroundings, less understanding of human errors, and more impulsiveness.

Which is perhaps how T., beloved by family and friends and community, was killed by a car a few days ago. My wife attended his funeral today, I’m writing while away from home, caring for my father. Our #1 son and I saw him about 3 weeks ago, T. was showing my adult son his home, acting as a mentor for our son’s transition towards more or less independent living.

The CDC’s has recommendations for reducing the risk of death for people who walk, such as using reflective clothing and a “flashlight” at night. The recommendations are not harmful but, really, they won’t make much difference. It would be generous to describe them as weak and unimaginative.

So what could be done? In the long term, decades from now, humans will not drive cars or trucks on city streets. Machines will do that better than the best of today’s human drivers. That will be a boon to all people, not least those with cognitive disabilities. I hope to live long enough to see that day — I only wish it would come as quickly as some imagine. It won’t though.

There are things we can do while we wait. Streets can be made a lot safer for walkers by reducing speeds, providing accessible crosswalks, converting 4 lanes to 3 with a turning lane (“road diet”) and enforcing crosswalk laws. We can and should push legislators to make those changes; perhaps there’s an opportunity to leverage the Americans for Disabilities Act to that end. It is a shame that, for political reasons, the CDC didn’t put that on their recommendation list.

But we can do more than improve existing roads and sidewalks. We can’t build autonomous cars yet, but we do have the technology to equip new vehicles with sensors warning drivers of pedestrians and cyclists and recording and transmitting close encounters. We can and should demand legislative action to accelerate development and adoption of augmented driving systems for pedestrian and cyclist safety. We should do this in T.’s memory, and for all the persons we love with and without special needs. That’s a recommendation the CDC should make, and it’s one we can advance to our legislators.

Special Olympics Minnesota: Athlete Leadership Programs

When he was in High School #1 participated in both adapted and mainstream school (ex: Mountain Biking) and community (ex. Minnesota Special Hockey) sports. His coaches have been some of the most important people in his life; what High School skills he’s developed came as much from his sports work as school work.

Even in his High School years, however, recreational sports were becoming more challenging. His teammates turned into young adults — a somewhat difficult population for a young man with a significant cognitive disability.

He’s in “transition” now (more to come on that I’m sure) and he’s almost 19. After a successful experiences with golf (state champ his div) and tennis (state champ his div) he’s doing more with special olympics. Most significantly, he’s developing personal relationships with other athletes, including role models who’ve taken on leadership positions in special olympics.

Which leads to our next project — engaging him in Special Olympics Athlete Leadership through Minnesota’s Athlete Leadership Programs. This won’t necessarily be easy — he has only recently shown an interest in helping other people and it’s still limited [1]. I’ll have more to say if he’s able to do the December program. If not I think special olympics will be very helpful for him as an athlete participant, particularly because of the role models who’ve completed these programs.

- fn -

[1] People with Downs Syndrome generally have more agreeable and pleasant temperaments than people with Autism — speaking as a father with much experience with the latter. Special Olympics used to be predominantly Downs Syndrome, but selective abortion is making Downs much less common. I am sure that is having many impacts on the organization.

529A (Able tax-free savings accounts) slowly state-by-state rollout starts 2016.

Able accounts are coming, slowly starting next year. On my quick review the fund looks like a good way to pay for housing.

The Arc has a useful fact sheet, but it predates authorization and treasury rules are only up for public hearing in October 2015. I think some of this is now incorrect:

• At $100,000 SSI benefits are suspended and restarts if falls under 100K, but medicaid benefits continue. When individual dies balance goes to medicaid.
• residents of one state can open accounts in another state, so you don’t need to wait for your state to create an account. (But NYT article below suggests we have to wait? Confusing)
• beneficiaries can rollover from an ABLE to a 529 if no longer disabled including another family member’s ABLE or 529 (Doesn’t say whether one can go the other direction, from a 529 to an ABLE). Rollovers can also go to a special needs trust. (q: So if the 100K limit nears can one rollover to the trust? What about other direction? 
• The fund can be used to pay housing (this is the big one), transportation (bicycle?), health related (gym?), disability care expenses (legal fees, oversight, etc).

The http://www.ablenrc.org domain is supposed to go live in September 2015 with more information. There is a $14K limit to fund per year.

The NYT has a more current review of 529A accounts, emphases mine. It’s unclear whether the 100K limit will be a balance limit or a lifetime contribution limit and whether that will vary by state. If it’s a lifetime contribution limit that’s not so good. It’s also unclear what happens if someone changes residences.

Tax-Free Savings Accounts for Disabled Are Expected in 2016 - NYTimes.com

… each must approve its own legislation to set up a plan. As of Aug. 13, 40 states and the District of Columbia either had passed laws or had proposals pending, but 10 states had no bill pending, according to an online registry maintained by the Arc, an advocacy group for people with intellectual and developmental disabilities.

The Treasury, meanwhile, has proposed rules to govern the accounts, and will hold a public hearing on them in October.

As with 529 college savings plans, 529A accounts allow contributed funds to grow tax-free, and to be withdrawn tax-free for eligible expenses. Anyone — including family and friends of a disabled person, as well as the disabled person — can contribute to the accounts, but there is no federal tax deduction for the contribution.

An important feature of the accounts is that they allow people with special needs to save for their care and education without disqualifying them from receiving government benefits….

… Typically, families must set up a special-needs trust to set aside funds for a disabled child without putting benefits at risk — a step that can involve costly legal fees to establish and maintain the trust. Funds in the Able accounts, however, won’t count toward that limit, so they may provide a simpler, lower-cost alternative for many families.

The accounts, however, have some limitations. To qualify, you must have been disabled before age 26. The funds have an annual contribution limit equal to the annual gift tax exclusion — currently $14,000. The account can grow to $100,000 without jeopardizing federal benefits (although some states may set much higher overall total contribution limits), but balances over that amount may prompt a suspension.

…  families may want use a combination of a 529A and a special-needs trust, depending on their financial situation, said Christopher Krell, a financial adviser and principal with Cassaday & Company. With special-needs trusts, there is no contribution limit and they can be structured to avoid Medicaid repayment. “The 529A accounts are great,” Mr. Krell said, “but they’re not going to get rid of special needs trusts.”

■ Can an individual have more than one 529A account?

No. Unlike 529 college savings accounts, you can have just one 529A account, and it must be established in the state where you live (or through the program your state contracts with).

■ How can I find out when 529A accounts will be offered in my state?

You can check with the agency that administers your state’s 529 college savings plan for updates. In early September, look for an online 529A resource center at www.ablenrc.org.

The state-by-state rules sound like a mess; I wonder if that was a GOP congress outcome. If the plans end up restricting an individual ability to move between states I wonder if there will be a constitutional challenge.

My gut sense is that we’re going to get a lot less than what we’d hoped for, but maybe things will improve over time. The special needs trusts remain very important. The real impact could be on paying for housing — that’s increasingly important given the seeming collapse of programs designed to provide housing for disabled adults.

Free online training program for Minnesota special needs workers

The Arc of Minnesota and the University of Minnesota are making Elsevier Publishing’s online training programs available free of charge to Minnesota residents; the list price for one of these courses is about $300. They are designed to support training special needs professionals.

There are four training programs, each with a university sponsor:

Direct Support (University of Minnesota): designed for direct support professionals (DSPs) and others who support individuals with disabilities.

Employment services (UMass): "designed for professionals who support people with disabilities and other challenges to find employment"

Personal Assistance (UCSF): “personal care assistants, home care providers, and family caregivers"

Recovery and Community Inclusion (Temple): "community mental health practitioners”. I assume this is primarily aimed at persons with substance use disorders, but it may include persons with schizophrenia.

The programs use old technologies such as Flash, Windows Media Player, and QuickTime. They won’t run on iOS devices.

The employment services curriculum is probably of most interest to us, if only to learn the “party line” and jargon. Topics include:

• Evolution of Employment Services
• The Employment-Services Professional
• The Role of the Job Coach Outside the Workplace
• The First Days of Work and the Employment Support Plan
• Legal Rights at Work and Self-Advocacy
• Preparing for Emergencies in the Workplace
• Developing a Task Analysis
• Natural Supports, Self-Maintenance, and Fading
• Why Work? An Overview of Work Incentives
• Proactive Planning: Staying on Track with Work Incentives
• Key Incentives for People Receiving Social Security
• Disability Insurance
• Key Incentives for People Receiving Supplemental Security Income
• There’s More to Benefits: Health Care and Other Subsidies
• The PASS: Helping People with Disability Benefits Create Careers
• Where Funding Comes From
• Social Security and Additional Funding Sources
• Social Security Ticket to Work program
• Self-Employment

Minnesota residents can request a new learner’s account. Other states may have similar programs, check with your local The Arc office.

 

PS. The signup process asks users to include the last four digits of a SSN as part of the user id. I think I know why they are doing this, but it’s a singularly bad idea. My last name is unique enough I simply appended the last four digits of my phone number.

US to fund less than one staff person per state to support special education information

Early in our 13 years of experience with special education we were surprised that our new country was unmapped. Surely someone had a map somewhere!

But they didn’t. Nobody has a map. There are Federal mandates, like IEP plans, that are common everywhere, but each state has its own details. Parents rely on organizations, like the Autism Society and Pacer, to fill the gaps. Parents with the ability to join volunteer at school or join volunteer organizations hear of essential programs by word of mouth. Relatively wealthy parents hire specialist lawyers to get the inside scoop.

Why isn’t there a map? I suspect it’s an emergent form of rationing. The demand for special education services far exceeds the supply; good maps would lead to a more conspicuous rationing mechanism (or lawsuits). I think this is true of many services, it’s not unique to special education.

Today there was an announcement of a DOE effort to improve the situation...

Special Education Training Efforts To Get Millions - Disability Scoop

… The U.S. Department of Education said it will grant $14 million to support parent training and information centers in 28 states and two U.S. territories over the next five years. The centers, which are located in each state, are designed to offer parents assistance with everything from understanding special education law and policy to interpreting results from evaluations….

I wonder why only 28 states. In any case, this comes to roughly $100,000 for each of the states and territories per year. After overhead I think that will fund a staff position, though that position will be lost when the grants run out. It’s not going to make a major change — the terrain remains unmapped. 

Magical thinking

Many people have superstitions of one kind or another. Our #1 has more than a few, and they contribute to his disabilities. For example, he bicycles miles out of his way to take certain favored routes for no reason he can describe.

He’s had these problems all his life. The only thing I can compare them too is a beloved dog of ours who developed an intractable aversion to the back yard of a new home. Nothing, absolutely nothing, would persuade her to put her paws on the unfrozen ground there. We have no idea where this came from, but it never wavered over the last seven years of her life.

It may be some dysfunctional associative learning — perhaps something unpleasant happened to #1 once and he forever associates it with a similar smell or shape or form. The rest of us can form these associations and dispense with them, but that process doesn’t work for him. This learning/memory dysfunction probably overlaps with some of the problematic compulsions we work on.

Sometimes we can find a workaround for the most troublesome aversions. One of these is a powerful aversion to any kind of bicycle adornment — including a saddle, frame, handlebar bag, a rack, or a lock. He’ll use the pockets of his bike shirt but that’s it. After some failed behavior change efforts we realized this fell into his “magical thinking” domain — reasoning is futile.

This is a safety problem because he rides his bicycle around and even beyond the metro area — thanks to our superb segregated bicycle paths.  Mobile phone technologies including Apple’s “Find Friends” mitigate some of the risk, but what if his phone fails? We need him to carry identification, emergency numbers, a multi-tool, a baggie to protect his iPhone in case of rain, coins for a rare payphone if one can ever be found and, ideally, auxiliary power for this phone. He’s not willing to put everything we want him to carry in his bike shirt.

We found a fix. He’s willing to carry these things in a bicycle bottle shaped container that’s stored in a typical frame mount bottle carrier. We put them in once and they stay there. One magical thinking problem solved.

There are a lot more of course. A direct assault rarely works. It’s all about finding these kinds of indirect solutions. We can’t always come up with them...

On being a special needs parent...

You are walking in a quiet wood. It is morning with a mild breeze. You dip your cup into the stream ...

An arrow sinks deep into the earth by your left foot. You leap forward, in mid-air notch an arrow and let fly on landing where you know your assailant will be. There are 3 of them, rested and deadly. The battle is joined.

The quiet returns. You dip your cup into the stream. You are always ready...

E prefers to think of this as akido, always equipoised to redirect the attack. I like ninja myself, cause I’m a guy.

It’s like that. You never know when a crisis will strike. When an innocent question will suddenly become a 30 minute negotiation. It’s like parenting a difficult 14yo, but it’s more and it lasts for decades.

No wonder studies show accelerated aging in special needs parents (though some of that may be financial distress related to cost of parenting special needs kids and adults).

On the up side, one never lacks a cause.

Imagining my son's memory

I want to understand how my son thinks, including how he remembers things. I think I can use that knowledge to help him be the best he can be. If I understood his mind, for example, I might be table to distinguish his memories from inventions and deceptions.

This kind of understanding isn’t easy. Not everyone thinks alike. Some “normal" people seem to think with visual images, other people, like me, do almost no visualization. Understanding the normal mind is hard, but my son’s mind runs on extra-buggy wetware. It’s even harder to model.

One clue comes from self-reports of people like Temple Grandin, an autistic adult and self-described intensely visual thinker. She writes about accessing ‘filmstrips’ to retrieve event data. Alas, my son’s mind, as best he can report, doesn’t work that way. [1]

Whether he visualizes or not I question the reliability of his memory. It’s not only that he has a hard time learning new things, he also seems to genuinely believe many things that are not true. These are generally plausible and self-consistent things that he would wish were true, but we know they are unfounded. I wonder if a fragmented memory architecture means that he is particularly vulnerable to the kinds of invented memories that are relatively easy to create in many adults. Maybe having a visual memory makes one particularly prone to invention of memories by visualization?

My experience with his memory, incidentally, fits with stories of low IQ adults who, under police interrogation, confess to crimes they didn’t commit. It’s easy to imagine him creating new memories out of suggestions.

- fn -

[1] It’s not easy to get him to try cognitive exercises (he suspects I have an ulterior motive, like, for example, changing his behavior), but I’ll try to get him to do the “window exercise” (count number of windows on one’s home, supposedly easiest for visualizers).

Special needs: so now have to worry about ISIS recruiters?

The New York Times did a good job describing ISIS (ISIL, Daeshite) recruitment of a cognitively limited 23yo woman. She’s not explicitly described as adult special needs, but she has a fatal alcohol syndrome diagnosis and limited employment options. She’s not that different from the kids and adults we care for.

Unsurprisingly her ISIL recruiter is not terribly high functioning himself.

It reminds me of the relatively harmless cults of the 1970s, but in those cults there wasn’t a lot of upside to special needs recruitment The cults wanted fundraisers; a certain amount of psychological disability was a feature, but special needs was too much. ISIL may have more use for people with cognitive disabilities.

It’s not at the top of the worry list, but if you care for a special needs teen or adult with a net connection (smartphone, etc) you can probably add ISIL to the long list of predators of vulnerable adults. Not the top of the list, but something to watch for.

Yay connectivity.

PS. I’ve long wondered what Richard (“shoe bomber”) Reid’s IQ is, and whether he’d fall in the sub 70 range of diminished responsibility.

Lessons from 18 years of a "disruptive mood dysregulation disorder" child

Just back from a Mountain Bike outing with #1. We had a great time. Can’t be that that many special needs NICA mountain bike racers; it’s something he’s proud of. He’s already telling tall tales of his daring runs. Another happy memory.

It didn’t have to be happy though. I’d planned a 3 day trip — some biking, some hanging, some other stuff. Instead after biking on day one he said he wanted to go home. Of course I’d already paid for two nights of peak season lodging.

It’s not clear why he cut the trip short, but in retrospect 3 relatively unstructured days was a lot for him. To make that workable I’d have had to plan out all 3 days in detail, and get the schedule on his iPhone calendar. I think he was also missing his sibs, especially since #2 is leaving for a 1 week autism away camp. Our kids are close, glued by shared struggle.

So this was yet another test for Dad - I’d spent the money, and now he wanted to bail. Did I fight for the principal of “commitment” or fold?

I said it was a happy memory, so you can guess I folded. The money spent was a sunk cost. It didn’t matter any more.  Once I told him we’d head home his mood transformed and we had a happy dinner. The next morning he hung out while I went off on a bike adventure of my own. We had a fun drive home. Tonight he remembers the trip fondly. I passed the test.

Our drive home gave me time to reflect. #1 is 18 now, and he’s “finished” [1] High School. Overall we’re about where I’d hoped we would be with him. There’s lots to work on, but he keeps making progress. Maybe we all did something right, not least his coaches and teachers.

So what did we do right? I think I can put it into 6 short phrases, 5 of which are deliberately familiar.

1. Choose your battles.
2. Make happy memories.
3. Accentuate the positive.
4. Cut your losses.
5. Tomorrow is another day.
6. Quit when you’re ahead.

Yes, 5 of the 6 are clichés. I did that deliberately; I realized I could take my original language and turn it into something superficially banal. Read it and try to imagine that you’d never heard those words before.

 

Here are the same ideas in the same order, but with different language…

1. Greenes/Explosive child: Divide behaviors into A (irreversible harm risk), B (criminal, reversible harm, C (infuriating, obnoxious). Always work on A, take B selectively, C is nice to do.
2. Make happy memories. Memories are made of doing things. Declare victory early. Take pictures. Put ‘em on the family screens. Burn the happy memories into the kids brains. Soon they’re programmed into thinking life was all happy. They forget the rest…
3. Kazdin and Shamu: Reward desired behavior, ignore (extinguish) unwanted.
4. Realize when you’ve got a losing hand and fold. That’s what I did today. After a while you know when you can win and when it’s time to remember what a sunk cost is.
5. It’s not a sprint, it’s an ultra-marathon. Don’t burn out in one battle, there will be time to engage with a winning hand.
6. When you’re winning, declare and celebrate victory. Don’t wait to see things to the end, celebrate the moment. Do this right and you have a heck of a winning streak. In this season, we have the power to define when each game ends and a new one begins.

- fn -

[1] He’s actually in an indeterminate state, which is a weird arrangement peculiar to special needs students. He completed his adapted course work, but after the graduation ceremony he was diverted from picking up his diploma. This magically keeps him in the school system, so he’s funded for a “transition” program that’s supposed to teach “work schools”. We think of it as 3 years of somewhat useful entertainment while his frontal lobes develop. I assume this weird arrangement is a time honored manipulation of old statute language.

I may write more about High School (the sports teams were the best part) and “transition” in future. There’s a lot to say, most of it mixed.

See also

• Things we might have done differently: High School 3/2015
• Changing behavior in children: Kazdin for most and what we do now 4/13/2015
• “Explosive Child” Greenes has web site for “Disruptive Mood Dysregulation Disorder” kids and caregivers 12/2013
• Training exotic animals, husbands and difficult children 6/2006
• Resolution 242 - discounting sunk costs 8/2010
• Be the Best You can Be: Techniques for negotiation with people on the autism spectrum 11/2014
• Be the Best You can Be: Reading about autism and ADHD - our personal favorites 11/2007