Autism and interest depletion - leveraging routines, calendars and checklists

As #2 enters late High School his interests have narrowed considerably. This means he has fewer options if he bores of the interests he does have, and increasing amounts of his time are spent in passive and compulsive screen activities that seem to produce dysphoria and ennui rather than satisfaction or happiness. It’s a common trend that seems unlikely to lead to a satisfying or independent life.

Fortunately, he’s aware of this and, when he’s not working through what I think of as an “autistic-arrest” (sudden deterioration in perception of self and context, often associated with anguish and psychic distress), he’s interested in working on it. He’s had some success, including introducing new activities like mountain biking, weekly five mile walks and routine calendar review. We’ve created an inventory of his interests categorized by:

1. Enjoys with cravings -- time limited by parents/external actors
2. Enjoys with cravings -- no time limited (bouncing on exercise ball in in this group)
3. Enjoys but no compulsions — tend to get displaced by craving activities, but if initiated they are enjoyable for him
4. Sometimes enjoys, feels good after doing. All exercise except bouncing falls into this category.
5. Things to try — items we (he, us) have selected to try to broaden his interests and provide him with more options.

As per the book excerpt on calendaring, we’re working with him to create recurrent schedules for his Category 3-5 items, staring with book reading. He’s receiving a small stipend for each book completed; he finds it very helpful to have us give him a concrete reward for completion of a new or challenging activity. It’s a curious part of his temperament that we’ve all learned to leverage.

Our thinking about this has been supported by some archived 2007 writings by Joel Smith, an autism activist. (#2 adamantly refuses to read blogs or writings by people with autism, but I follow Joel’s current blog). Joel was using a PalmOS PDA back then, my book project is about smartphone use.

This Way of Life: Living With Executive Dysfunction (Joel Smith)

… Train yourself to follow a routine, with few deviations. The closer you follow a standard routine, the more likely you are to remember it … The more frequently you use a routine, the more likely it is to become a habit…

… solving the executive function difficulties probably won't solve the problem without you first solving the other underlying problems. In addition, your strategies will not motivate you to do a task you don't want to do. These strategies will only help you perform tasks that you want to do…

… Get rid of strategies that don't work. If, after a week you aren't able to establish the strategy, it probably won't ever actually work. If, after a month, you are still doing the strategy, you will probably be able to keep doing it…

… Sggab (amanda at autistics.org) finds that having someone else to watch over her helps her to complete tasks and overcome the problems with starting a task. Some people find that having others call and remind helps get a task done. However, others claim that such reminders only reinforce inertia, so this may be very individual specific…

… Kalen (news at paradox.freeserve.co.uk) says that an externally imposed schedule, such as the kind of schedule a student in formal education must follow, helps her start all her other routines, and also improves her overall functioning…

… I use a Palm Pilot to help organize my time. Even the cheapest Palms, such as the will help some who have executive function difficulties.

The most useful features of the Palm are the to-do lists and calendar. One of the advantages of some of the newer models is the "silent alarm" feature. Reminders can be set to alarm by vibrating instead of beeping, which allows you to get your reminders discreetly and without disturbing others in a class or event.

I also use an enhanced version of the Palm ToDo list, called “ToDo+”...

The entire article, and his reminders and checklist page, are well worth reading for other approaches to routines like eating, dressing, taking medications, paying bills and the like. I’ll be referencing his advice in the smartphone book.

Book chapter excerpt: Smartphone calendaring and special needs

For the book. Comments welcome …

Calendar management is one of the most powerful smartphone tools for independent living. Knowing what to do when takes a lot of memory stress away. The Calendar is where healthy and helpful habits are maintained. It can be very hard for spectrum Explorers to initiate new work, scheduling it on a calendar can be a good launch step. Special Hockey games, doctor’s appointments, work schedules, study schedules, screen break times, family outings, dates, holidays — it all starts with the Calendar.

That was true in the days of the family wall calendar, but the smartphone Calendar is a big improvement. It’s always at hand, appointments have reminders, and, best of all, it’s easy for one or more Guides to manage an Explorer’s Calendar.

Calendars are powerful but relatively easy to use. Every Explorer able to read at a 3^rd grade level will be able to use a smartphone Calendar app. The key is to practice and reward Calendar use. The “Guide’s Toolbox” chapter described a general approach, with the Calendar there are some simple specific techniques. One is to respond to most “when” questions by asking your Explorer to access and review their smartphone Calendar.  Another is to reward routine daily review of the current and next day’s Calendar. Some Explorers may be stressed by the imposed structure of formal Calendar, in this case you will need the usual mixture of patience, reward, pressure, support, persistence, strategic retreat, reframing, empowering and more persistence. Just like everything else that’s new and important.

Of course this assumes that you are also using a Calendar effectively! Actions and examples always mean more than words alone. You’ll want to be comfortable with your own Calendar use before you introduce Calendaring to your Explorer.

….

Apple and Google take similar approaches to Calendaring, but there are some important unique advantages for each one. 

Both Google and Apple have Calendar apps that work well with your smartphone. Both allow a Guide to remotely manage and review the Calendar from a web browser, including adding new items remotely. Both Google and Apple support invitations to Events, Event locations with integrated maps, and calendar overlays. Calendar overlays are pretty useful, they let users see several people’s color-coded events in a single integrated calendar. 

On the smartphone both Google and Apple are building “intelligent agents”, like Siri and Google Now, that use Calendar information to create reminders and suggestions.

Apple’s Calendar solutions have an advantage of simplicity — as long as you stick strictly to “iCloud” and don’t try to subscribe to any “Calendar feeds”. In my experience few people use Calendar Feeds, so as much as I personally love them this may not be a great problem. Apple’s Calendar solutions also work well even when an iPhone doesn’t have data services.

Google’s Calendar solutions are more powerful and far better at working with Calendar Feeds, not least because many schools, businesses and organizations use Google Calendars…

See also: Autism and interest depletion - leveraging routines, calendars and checklists.

Smartphone calendaring: a brief survey

i’m collecting some data on how people do calendaring on their smartphones to support my special needs smartphone for independent living book project. If you’re reading this before December 20th 2015, can you please fill out this 2-3 min, 3-7 question survey? Thanks!

Autism and the police: St Paul Police Department Western District leads

Most of the autism meetings I attend have a largely white audience. Tonight’s ‘CARE Project Meeting’, hosted by the St Paul Police Department with help from the Autism Society of Minnesota, was different …

AUSM - Autism Society of Minnesota - CARE Project Meeting

Officer Robert Zink and the St. Paul Police Department will host an open meeting about its CARE Project (Cop Autism Response Education). Officer Zink and the department invite the community and other precincts to participate, learn more, and offer suggestions on the CARE Program.

Dec. 14, 2015 from 6:30-8 p.m.

St. Paul Police Department
389 Hamline Ave. N.
St. Paul, MN 55104

It was an impressive presentation to a diverse audience, including several who’ve had unhappy and sometimes well publicized problems with local police (transit police came up a few times). Despite that history the audience was supportive, seeking more action sooner rather than something different.

Officer Zink has two children on the autism spectrum, with the help of supportive Chief he’s been leading a police-community initiative to improve the police encounters with teens and adults on the spectrum. He’s been at this in for a few years, but now he’s morphed into a 1-man community service organization with a taser on the side. Obviously one man can’t do this alone; the SPPD is scrambling to scale up. That’s why they marketed this particular meeting..

It’s early days. They don’t yet have an informational handout to share with our local health systems. There’s a unofficial Facebook Page, otherwise communication is small scale - except for a recent newspaper article. They’re working to train local officers to manage escalations, understand meltdowns, and, in one case, manage large scary angry men with M&Ms (Officer Zink has an amusing story of running into a Walgreens, jumping to the front of a long line, and running off to a squad car with the candies. That was probably not a happy queue.)

There’s an optional registration program so, in theory, police called to a household because of a crisis, such as assault of a sibling or parent or self-harm, will know how to respond. Our family will be completing the contact form:

The SPPD western division is setting up protocols for contact before 911 calls, including home call introductions. Less predictably, they’re setting up post-911 follow-up visits as well.

Bottom line: One of the most encouraging autism community developments in several years.

Special needs smartphone: draft sample sub-chapter on Google Nest Cam use

Early version …

….Some people with cognitive disabilities may be prone to impulsive anger, and may need monitoring when home with siblings but no parents. A teen with ADHD and autism may alleviate boredom by pestering a sibling. Head injury related to seizure activity could lead to extended unconsciousness. Kitchen hygiene neglect may be causing roommate or landlord problems.

These are all familiar problems for supporters of special needs teens and adults. In each case we’d like to be able to peek around the corner, even while we’re at work or simply away from home. We can do just that with a smartphone and some gear, we can even make warnings and ultimatums come out of thin air.

The gear is something like Google’s “Nest Cam”, formerly known as the DropCam. The Nest Cam is marketed as a home security device for $200 plus a $100/year fee for access of up to 10 days of stored video. At the moment it requires a WiFi network; Nest doesn’t sell a mobile cellular version.

For the situations mosts of us are dealing with we don’t need the stored video, we just need to be able to launch the Nest Cam app on our iPhone or Android and see what the camera shows. The Nest Cam has a speaker; the app lets us “speak” from the camera and see and hear responses. It’s not suited to conversation, but it works well for “Stop That!”. The smartphone software can be be used with multiple Nest Cams.

There are less expensive competitors, but the Nest Cam comes with excellent Android and iOS smartphone software and lifetime access to secure, reliable, on-demand streaming video backed by Google’s infrastructure. For our particular needs it’s the only solution worth looking at.

The Nest Cam has a single power USB power cord. It can be mounted on a wall, but most users will place it on a convenient shelf. It’s relatively easy to connect it to an encrypted home WiFi network. When you connect to a Nest Cam from a smartphone it begins streaming video to a secure Google server and from there to your phone. At that point you can see, and more importantly hear, what’s happening at the camera locale. Depending on what you’re seeing you may sign off, phone, or use the built-in speakers to deliver a suggestion.

The standard Nest Cam configuration turns a red light on when in use, but the light can be disabled. If the video-active light is disabled there’s no way to know if the video is streaming or not.

On demand notification-free monitoring has an ominous flavor. In practice, of course, it depends on the context. The average teenager does not want Mom or Dad doing secret observation, but if it keeps their older brother calm and well behaved around the XBOX many will welcome it. In some cases a special needs teen or adult will find the existence of the camera calming, so that in practice it is rarely used.

In other cases the camera may be masked and the video light will warn that an audio channel is opened. Then video may be enabled or not depending on the circumstances. In other circumstances video might be activated only if both text message and phone call go unanswered. There are many ways to use this technology wisely and to everyone’s mutual satisfaction….

My book to be: The special needs smartphone for independent living

I’m working on a book with a working title of Special Needs Smartphone. I don’t think that will be my final title, but it’s a good description. It’s a book I’m well placed to write; I have years of experience with two very different special needs smartphone users, I’m a geek, I’m used to writing, and I have the opportunity to do it. I’m not expecting to make money, but I do hope to make a positive difference. The book will cover both iOS and Android (that’s not easy, by the way :-).

I’m writing this book for parents and other supporters of teens and adults with a range of different minds. This includes teens and adults with IQs of 60-70 and limited reading skills, but it also includes normal IQ autism spectrum teens managing disabling preoccupations or aversions to some independent living skills. Some on the spectrum, for example, might find calendaring painful, have an aversion to lists and schedules, or be unfortunately prone to getting lost.

The goal of this work is to support independent living and mitigate harm that can come to a vulnerable population living with a tool of amazing, sometimes frightening, power and versatility.

I’m considering publishing options and a kickstarter campaign, but my default assumption is that I’ll self-publish through Amazon print-on-demand and self-fund. For the community I’m trying to reach I think a printed book is essential, eBook is secondary.

At some point in the next few weeks I’ll launch a domain and blog/tweet under my “true name” to promote the book and support readers. Until then I’ll have some posts here; I like blogging as a way to think about what I’m working on and some of these posts should be useful in themselves. You can get a feel for what’s coming by reviewing the Best You Can Be blog posts I’ve written on this topic over several years (Technology tag). One caveat — the book tone will be lighter and brighter than my usual somewhat dour style (I blame my Scots ancestry).

If you have ideas, advice, want to recommend a publisher or just want email notification of publication, please email me at jgordon@kateva.org or leave a comment below.

I’ll let you know how it goes.

529 ABLE accounts and supplemental needs trusts for disabled adults - a few bullet points

We set up the legal aspects of a supplemental needs trust for #1 several years ago — including a taxpayer ID for the trust. Then we kind of dropped the ball; I don’t think I quite understood the next steps in setting it up.

Today we reviewed current law with a specialist attorney. This is much too complex a topic for me to fully describe in a blog post tonight, but I’ll share some of the key points I wrote about.

• Special needs trusts, supplemental needs trusts, and, I think, the new 529 ABLE plans all require proof of disability, specifically the inability to work with reasonable supports. (If you think about this too much your head will hurt — especially given current fashion (consensual hallucination) for non-adaptive workplace employment.)
• The assumption behind all of these plans is that #1, sooner or later, receives SSI benefits of $720/month and medical assistance (yeah, extreme poverty). The old-school approach was for the $720 to be paid to a care business which would use it for room and board and provide $92 (precisely) back for spending money. That approach is now being replaced by fairy dust and wishful thinking by something else that nobody quite understands yet.
• Somewhere to the side of these SSI payments are something called “waivers”; funds that can be used to pay for a personal care attendant. There used to be a special waiver program for developmental disability but those funds are exhausted. Now there’s one underfunded program of waivers that covers both physical and cognitive disability (CADI). These are not relevant for us quite yet.
• The “best” way to establish legal disability, and hence eligibility for what we’re interested in, is to receive SSI disability. That can take a while. An alternative route is to work with #1’s physicians on some legal disability statements. We’re doing both.
• In general, if you get money when you’re on SSI, through any means, you lose SSI contributions and your maximum bank balance is $2,000. Except see below.

Ok given the above, what about the ABLE and the Trusts?

• Special needs trusts are not of interest to us. These are funded by the disabled person’s money, typically as the result of a legal settlement.
• 529 ABLE plans are not yet operational. There’s real uncertainty about how much supervision/independent control there will be, and fees are likely to be relatively high. These can be funded at a maximum yearly contribution of $14K and a maximum total balance of $100,000. The money is under the direct control of the named beneficiary — which for #1 would mean huge candy purchases. If the beneficiary dies the balance typically goes to the state. I’m not clear on exactly what 529 money can be used for, I believe housing and education are the big ones. We’re not focused on these yet but depending on what they can be used for they might be a complement to supplemental needs trust.
• 529 ABLE plans can have tax-free investment growth, but unlike educational 529s they can’t be transferred.
• Supplemental needs trusts are what we’re doing now. Money from the supplemental needs trust doesn’t reduce benefits as long as it’s not paid directly to #1 and it’s used to buy “things”, like clothing and bicycles and iPhones and mobile service — but not “food or shelter”. Not shelter, that is, except that the trust can “contain” (own) the title to a residence. A supplemental needs trust has an associated taxpayer ID (the attorney gets this).
• The Supplemental Needs Trust is basically funded by our will. So there’s not much in it until we both die.
• The big deal with a Supplemental Needs Trust is real estate. Assume we buy a residence that #1 and others live in. While we’re alive we’d typically own it and he’d pay rent (legal requirement) out of SSI payments. When we die the Title is willed to the Trust, presumably along with money to pay taxes and the like. I think.
• The supplemental needs trust can be liquidated. There are no tax advantages to this trust.

Yes, this is a mess. I’ve probably mangled it, but it was in bad shape to begin with

 

See also:

• A grave problem with 529 plans and special needs children 5/2009
• Sundry notes from a meeting on special needs and the law 5/2009

Update 2/2016: 

Our attempt to work with #1’s psychiatrist on disability opinion was a dismal failure. She wanted nothing to do with it. I suspect that might be common. So I think SSI judgment may be only route.

Special needs smartphone: looking for a Notes app with a difference

I’m working on a book about iOS and Android smartphone use by special needs teens and adults; It will have a special focus on supporting independence. The project is in its early stages, but sometime in the next few weeks it should get a companion domain and a blog. In the meantime I’ll have a few posts here on related topics.

One of the things I don’t have an answer for is the “deletion problem”. My #1, for example, hates clutter. On an iPhone that means he compulsively closes open apps, deletes his browser history, old email, saved images, iMessages and even the Notes I’d like him to have. Notes that consist of things that it would be useful for him to remember.

The only thing he doesn’t delete are his Contacts.

From a psychological perspective this is interesting, but since he has significant memory disabilities it’s rather self-defeating. So I’m looking for a solution in the myriad of iOS note-taking / extended memory solutions. My high level requirements are:

1. Plain text support (anything more is either “nice” or unwanted complexity).
2. Search
3. Web client (key to a support person creating or contributing to notes). Native clients are a plus, but the support model I’m using must include Chromebook
4. Efficient backup/restore of all or part of a notes collection from the web client and/or the ability to make some subset of notes read-only for our smartphone user.
5. Simplicity.
6. An exit strategy — ability to move content to another solution if needed.
7. At least a 3-5 year expected lifespan (which is a long time in this market)

Apple’s native Notes.app comes close to meeting my requirements. It even has limited undelete functionality on iOS, but as of Dec 2015 not via iCloud [1]. (I investigated Apple’s legacy support for Google (Gmail) IMAP notes sync, but this does not allow remote authoring or backup and has other limitations.)

I personally use Simplenote; it can be paired with nvAlt on OS X to allow bulk import of a standard set of text files, but that’s a geek-only solution. There’s no backup or import ability in the Mac client.

Anyone have ideas?

- fn -

[1] Apple’s support article on iCloud Notes data backup is a bit humorous. “… Copy the text of each note and paste it into a document on your computer, such as a Pages or TextEdit document. Save the document to your computer.” Must have been painful to write that!

Update: Shawn Blanc’s 2013 post has some good ideas. Reviewing it I see Simplenote eliminated Dropbox sync, and Justnotes.app, which Shawn liked, has been discontinued. Byword, Nebulous Notes, and Notesy use Dropbox as a sync repository; Byword and Nebulous Notes are complex but Notesy might be an option. Microsoft OneNote is powerful and impressive, but also complex.

Update 2: Simplenote.app allows sharing of note by the email addressed associated with a Simplenote account. Shared notes can be collaboratively edited, which is good and bad. On the other hand, if one collaborator deletes a note then they are only removing themselves as a collaborator — every other collaborator keeps the note. So this may actually work reasonably well, with the additional option to use nvAlt (Mac) or ResophNotes (windows) for more robust backup and restores.

Cognitive disability and AI assistance with Google Inbox.app. Suddenly, a new world.

Google announced nsAI (non-sentient artificial intelligence) assisted email today, it will debut in the Android and iOS Inbox.app.

My first thought was that this will be kind of annoying. A few minutes later I was thinking about AI-responses generating AI-responses and the various spam implications. I decided this would be interesting, exciting, maybe a bit scary. There will certainly be unexpected consequences.

Then I remembered how much iOS word and phrase completion has helped #1 son with texting and email. I remembered that I’ve been watching for more nsAI assistance to support both of my sons. 

That’s when I realized how big this announcement really is.

I’ve reinstalled Inbox.app on my iPhone and Ill be planning how to transition both of my sons to the new platform and how to introduce the concepts of nsAI assistance to our local educational system.

This is how the future comes crashing in.

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

Shared reminders for family use - iCloud, iOS, OS X and even Windows Outlook.

iOS and OS X Reminders can be shared among family members. A very useful way to remind #1 or #2 of things they otherwise have trouble with.

I’m adding practice with this to #1’s personalized learning iPad curriculum.

Personalized learning with a school iPad in special needs: Feedly and Pinboard shares

I may be have an opportunity to do some more writing, in which case I’ll have more to say about the good and imperfect aspects of our school district’s iPad-based personalized learning program for special needs students.

One imperfect aspect of the program is that it doesn’t exist just yet. The school iPad is real though, so #1 and I are doing something on our own. He completes daily assignments to earn home WiFi services for his school iPad. 

One part of the program that works well is using a Feed Reader [1], in our case Feedly. I’ve subscribed him to a number of Feeds including

• 6 NYT section feeds [2]
• 7 local and national road and Mountain Bike blogs, the latter has video feeds
• Family Calendar feed and photo share
• CNN Student News (video)
• Sports: ESPN, Formula1, Golf
• Local: streets, walking

His daily assignment includes reading one or more feeds and doing a verbal summary of something he’s learned.

 

Today I added a new feed, one based on my Pinboard shares. I use Pinboard as a microblog link-comment platform. Every Pinboard post tag has a feed, and via app.net PourOver and IFTTT rules I publish to Twitter, App.net and my own archives. I started tagging science and other things I want him to study with his first name, and then I added the Pinboard RSS for that tag to Feedly.

 

So when I see a great BBC visualization of exploring the earth’s core, I just add his name to it and it shows up in his Feedly reading list as assigned reading.

[1] When the school program started we could install approved apps from the School’s service app, or “free” App Store apps (meaning ad-supported or exploitative, so superb educational apps like DragonBox are unavailable). So we went with Feedly as a feed reader. Feedly has actually worked quite well, but sadly the school has ended the App Store service leaving many apps of interest to special needs learners in limbo. If Feedly stops working I’ll switch him to using either AOL’s free Feed Reader or Feedbin.

[2] He reads at a 4th grade level. I don’t know why he likes to read the NYT.

Things we might have done differently: High School

#1 is finishing High School. Some good things have happened in High School, but if we could rerun the tape we’d have tried something different — perhaps a local charter school that specializes in autism disorders.

The Junior and Senior years have been remarkably weak. I think this is partly due to local conditions; we’ve seen problems with leadership, policies, and funding — particularly funding and support for class aides.

I don’t think that’s the whole story though — I suspect very few schools or school districts have figured out how to manage special education for ages 16-19, particularly in integrated settings.

I’m concerned the post-secondary “transition” period will be no better — particularly since care of special needs adults in the US seems to be replaying the history of psychiatric deinstitutionalization (note - did not go well the first time).

No particular words of advice here — except don’t be afraid to do something different after middle school. You might not do better, but you probably won’t do worse.

Curbi - iOS controls for special needs teens and adults

curbi gives parents, guardians and other caregivers the monitoring technology Apple built for corporate customers. It’s $7/month “Per household”.

You can’t use it with school iPads because they already have similar “management profile” technology installed. It should work with home devices.

It’s something I’m considering.

Clarity - Plantronics brand producing senior products is relevant to special needs

After age 70 or so we are almost all “special needs”. By 80 cognitive decline, sensory issues, and memory loss puts the average adult firmly into the special needs category [1].

So aging boomers are great news for special needs young — there’s now a reasonably profitable marketplace to support products of interest to the special needs community. That’s why we’re seeing affordable monitoring tech (DropCam), tracking tech (Find Friends.app), and Plantronics Clarity brand.

The Clarity brand markets amplification, but that’s a bit of a polite facade. The brand is really about simplification - amplification is relatively trivial. The E814CC cordless phone with answering machine is what most 75+ adults want. The Clarity “Pal” is a higher class version of the China-first Snapfon ezONE-C that worked well for my mother (though it’s not clear this is still sold).

The most interesting Clarity product is the Sempre “extra loud bluetooth speakerphone”, a member of the quickly emerging post-landline home phone product space. At $290 list this is a very expensive alternative to a $20 Cobra PhoneLynx (or $45 Xlink) and a $40 corded phone, but the BT914 is a reasonable alternative ($80 on Amazon).

It’s good to see these kinds of products emerge.

[1] By now we boomers know that “60 is the new 40” falls into the same category as “invest in gold”.