Employment - not.

Almost 4 months ago #1 accepted a mainstream (unsupported) hardware job that sounded just about perfect.

 

Two days ago, returning from a 1 week family holiday, he quit. Without notice.

 

He gave us no real warning, and, not atypically, disregarded our strenuous advice. In follow-up we hear he was doing the job well enough, his supervisor was surprised he quit. And annoyed he quit without notice.

 

#1 has had various explanations for why he left. I doubt he knows. The one he currently favors is that the work wasn’t interesting enough — he was doing grounds maintenance and he wanted to work with machinery.

 

In our own post-mortem we came up with 10 factors: 

1. Social isolation, there was really nobody there he would be comfortable with, no other cognitively limited adults.
2. There was no coaching, no support, no communication channels. It was an unsupported job.
3. He had no concept of “giving notice”, wasn’t aware that was something one did.
4. A special needs friend he admires spoke fondly of his (much less appealing, more difficult) job in food services at a sports center and advised #1 to apply.
5. He was unhappy at not getting “time off for state fair”
6. He was bored, the job wasn’t exciting any more, wanted to do more interesting things
7. The holiday took him away from his routine. His memory is odd; after 3 days things seem less familiar. We needed to drive by his work on our return and anticipate reentry problems.
8. The commute was hard and the novelty of going by bus had worn off.
9. He has unrealistic work expectations (dream meme scam)
10. He has a history of quitting sports teams after about 2-3 months, this fits a trend.

I think it all adds up to he got the job prematurely; he’s not ready for unsupervised and unsupported work. Maybe in 4-5 years he could do this work reliably and appreciate it, but he’s not there yet.

Now we have to twist his arm to get him back to his transition program (two years left). He now has no screen time at all before 5pm, so life at home is reading, bicycling, sleeping, and chores. That should make his screen heavy transition program time more appealing.

The dream job scam - schools are doing us no favors

Sometime in the past decade or two US schools were infected with a “you can do what you dream” meme.

This made some sense for cohorts oppressed by poverty and racism. It makes less sense for privileged whites where employment is constrained more by native abilities than environmental constraints. It makes no sense at all for the special needs cognitively disabled population. In fact, it’s malignant.

Throughout his school life #1’s IEP’s featured his “dream job”. Often this was K-9 training officer.  A job he did not have a snowball in hell chance of getting. My childhood dream job was to be an astronaut — that was way more feasible, at least before the Challenger disaster.

The reality for kids like #1, particularly given the current American fad for mainstreamed and relatively unsupported employment, is that he’ll  either be unemployed or do boring and unpleasant work cleaning, serving food, or, ideally, working in a (non-Amazon) warehouse. The “Do what you dream” scam just makes reality more disappointing. 

This isn’t so different, of course, from what work is like for the majority of Americans. I wonder how much alleged millennial work unhappiness has to do with the You can Dream meme.

Employment - an unexpected direction for #1

Our #1 has always straddled the borderline between (legal) disability and non-college employment. Much as he has been on the borderline between participating in conventional sports (rec hockey, adult hockey) and assisted sports (special hockey). 

That trend continues. During a work rotation through the first year of his ‘transition program’ he was offered part-time (50%) conventional employment doing warehouse work. Not enough to live on, but perhaps a problem for qualifying for disability, supplemental needs trusts, 529 ABLE plans, housing support, medicaid and more.

He is, of course, quite excited. We have, of course, mixed feelings. We haven’t focused on managed savings, budget training, debit cards and the like. That seemed years away, and likely to involve only trace amounts of money. What happens now to his transition program? Do we now get him his (deferred during transition program as is the peculiar norm) high school diploma? Do we divert his income into “room and board” that we can in turn invest in an S&P index fund for him?

What about transportation? He hasn’t completed transit training and it’s a difficult 1 hr bus ride to his job site. We are fortunate he is a strong cyclist, the weather is decent, and there’s a safe 30 minute route to work.

I suspect he will tire of employment once the novelty wears off. That has been a common pattern with other activities on the far side of disability. He is older though, and we see signs of more executive function. Flexible we remain…

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.

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.

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.

Changing landscape of adult special needs: Housing in the Twin Cities

As our eldest heads towards his last year of High School we’ve been focusing on the housing and employment landscapes. Focus is hard, because both housing and employment options are changing quickly.

I’ve been thinking through the bigger picture of what’s going on, which has something to do with demographic squeeze (aging boomers), slow economic growth (aka “secular stagnation”), the large role prisons play in American special needs housing [1], ethnicity and special needs services, Baumol’s Cost Disease, reaction to scandals like ’The Boys in the Bunkhouse’, the Minnesota Meto case, Staten Island’s horrific Willowbrook State School [2] and to the history of sheltered workshops for the blind. All summing to well intentioned but fuzzy thinking that recapitulates the idealistic failure of deinstitutionalization - including mixing cost reduction with reform.

Ok, I really do need to write that post — which is to include a survey of what’s happening in Europe and Canada. Someday - but not today. Today is an edited contribution from an anonymous contributor on the current state of special needs housing in Minnesota taken from a recent meeting in the Twin Cities (emphases mine). This complements notes from a similar Nov 2013 meeting.

[meeting was]… run by Sean Burke, a lawyer with MN Disability Law Center, who is on a housing law fellowship there (paid with money donated to the law center to fund his work in this area—3 cheers to someone)

 

…. Sean says state and counties are still establishing guidelines and rules for how the housing rules will work.  Next couple of years will be important in rule development.  Laws are changing, but could cause unintended problems, and lose some of the group home advantages--eg safety.  He believes can be good opportunities however, for better living without problems that did exist in poorly run group homes, which could resemble mini institutions.

 

Compares it to the IEP process, where it has taken 30 years for schools to come to terms with what the Disabilities Act requires them to do.  Says we need to approach this as we do IEP--with an idea of what we want to ask for.  If we wait for them to propose what they are willing to do, it will be smaller and less.

 

NB: I was thinking that I was really going to miss the yearly IEP process when the kids graduate from high school; but now happily we get to do it for the rest of our lives!

 

… 1980s—reaction to Willowbrook etc—Feds authorized money for HCBS (home and community based services): Federal tool/mandate to take institutional money and use it for community services (although these not defined).  Suspect Texas used this money to send young adults to work in Iowa turkey farm.  MN used this money in 1980s to establish 4 person group home model, run by private businesses.  This has lasted until last 5 years or so.  

 

State of MN said in 2009 no more group homes to be established [Pawlenty/GOP administration].  Seems like combination of Fed response to lawsuits, re institutionalization,  and MN response to expense of group homes.  This sudden change has everyone trying to figure out what can be done and what money there is for it.  

 

MN is developing an “Olmstead Plan” for this purpose— taking its name from the Supreme Court decision Olmstead vs Zimring in 1999, where the state of Georgia was told it needed to find community based services for cognitively disabled people who wanted them....

 

Also, as of this year “community setting” is now finally defined by feds—10 features. There is a particular focus on privacy and choice as defining a community setting. There is real concern that the well regarded Fraser apartment building with only disabled residents will not meet the “community setting” criteria.

 

Three parent and family scenarios were presented, all with cognitively disabled children in 20s.

 

D lives in duplex shared with his parents.  1/3 time staff care, paid for with CDCS waiver, rest of time including overnight is parent care.  They are not sure this will be final solution, but now feel that can take a few tries to find what works, don't need perfect plan at start.  Their CDCS waiver pays less than a DD waiver, but lets them have more flexibility about how they can use the money--most used for PCAs, some used for technology in his apt, some for a personal trainer, some for transportation, etc.  His home has a space for sensory things, a space for quiet things, a good chair..

 

They did not like the day programs they visited … so plan his days themselves with use of Highland Friendship club activities and personal trainer, trips with PCA etc.

 

They used the "Person Centered Planning" process to develop this plan, a formal process that the waiver can pay for (ARC can do this--called Lifetime Assistance Planning).  They found a team of people to be involved with D —trainer, neighbor who checks in, family friend to be maintenance guy.  These roles are specified in the plan.  They feel these people will remain involved if parents die.

 

… They had to negotiate all of the above arrangement with the state, who will do “assessments” of the needs of the people getting wavered services.  The state has to agree with the family housing plan.  The family found that the state risk assessment gave the the evidence they needed to get the monitoring technology in D’s home paid for by the waiver, however.

 

D gets SSI (about $750/mo) and “MN supplement mental aid shelter needy” or MSA Shelter Needy ($200/mo) plus food stamps $51/mo...

 

M lives at home.  He gets about $760/mo Soc Security disability, he does not work.

 

B lives in a home owned by his father with 2 other cognitively disabled young men…  did a lot of work with state and county to establish this house, an example of an IHO (independent housing option—a term used by the counties, basically means anything that is not a group home).  B has a DD waiver (started with a CDCS waiver, hard work to convert it to a DD waiver a few years ago).

 

B goes to center based DTH (day training and habilitation) at Merrick, where he gets vocational training, and B and housemates have staff in the home from a licensed service provider approved by the waiver board.  One of B’s housemates has a job at Davannis through Merrick.  Also get money from SSI and RSDI  (retirement and survivors disability insurance?), plus MSA shelter needy $200/mo, and $16 food stamps/mo.  Plus he earns about $200/mo.  

 

The IHO setup was complex. It required working with an existing group home, learning to structure an IHO, and writing an RFP

 

When talked to county about how much money available, was told “you won’t get as much money with an IHO as in a group home".  After extensive pressure found B was eligible for $155/day for a group home, they managed to get 80% of that for the IHO.

 

All say the evaluation process is in flux, and the parental fees are in flux.

 

Parents worry about loneliness in a parent shared duplex, about segregation in an IHO.  Also has been a problem that with live in staff, there can be confusion about whose house it is—the staff’s or the person with disabilities’, can use rotating staff for overnights to prevent this problem. Some parents wish for a cooperative housing example—like in the 60s—separate bedrooms with a common living area and shared meals, and mix of disabled and non disabled residents. That does not exist now. 

 

I asked Sean whether the state is trying to avoid what happened with mentally ill in the 70s—he thinks that state will pay what needed to get the community services, MN is just a good state that way.

 

Sean says that there are other HCBS services and money that can be used for housing if your child does not get a waiver. Also that in this time of change, keep talking to everyone you know. 

[1] And long term care of mentally ill too.

Developmental disabilities and sheltered workshops: "free" to starve?

This April 2014 announcement portrays the end of supported employment for the cognitively impaired as a victory similar to the ADA’s benefit for the physically disabled … (excerpts and emphases mine):

Rhode Island Settles Case on Jobs for the Disabled - NYTimes.com

The Justice Department on Tuesday announced a “landmark” agreement with the State of Rhode Island to free people with developmental disabilities from a decades-old system that kept them unjustly segregated in sheltered workshops and adult day programs, removed from the competitive workplace and the broader community.

The settlement, which addresses the civil rights of about 3,250 Rhode Island residents, also provides a road map to compliance for the 49 other states, federal officials said. They estimated that across the country, 450,000 people with intellectual and developmental disabilities while away their days in essentially cloistered environments…

… people with developmental disabilities and aspirations who spent years stuck in sheltered workshops that financially exploited them.

There was, for example, Steven Porcelli, 50, of North Providence. In a telephone interview before Tuesday’s announcement, he recalled graduating from high school, working briefly at a hardware store, and then being sent to a sheltered workshop run by a nonprofit company called Training Thru Placement.

For about $2 an hour, Mr. Porcelli assembled jewelry, packed medical supplies into boxes, grated cheese and stuffed peppers for an Italian food company. All along, he said, “I did want another job, because that’s what it was supposed to be: training through placement.”

“I was there for 30 years,” Mr. Porcelli added. “I was doing piecework most of the time, which I didn’t like too much.”

Jocelyn Samuels, the acting assistant attorney general for the Justice Department’s Civil Rights Division, cited Mr. Porcelli’s case, among others, in unveiling what she called the “landmark settlement” to address the “unnecessary segregation” of sheltered workshops and day facilities.

“We cannot wait another day to change,” Ms. Samuels said. “And we won’t.”

Under the agreement, Rhode Island — which federal officials praised for recognizing and embracing the need for reform — has 10 years to do the following to resolve violations of the Americans With Disabilities Act:

■ Help state residents with developmental disabilities obtain typical jobs in the community that pay at least the minimum wage and offer the maximum number of hours consistent with the employee’s abilities and preferences;

■ Provide support for nonwork activities in the mainstream, including community centers, libraries, and recreational and educational facilities;

■ Prepare high school-age students with developmental disabilities for competitive jobs in the community through internships and mentoring programs, among other efforts;

■ Redirect the “significant” public funds that are used to support segregated settings toward encouraging services in integrated settings.

… They determined that Rhode Island had “over relied” on segregated settings, to the exclusion of integrated alternatives. About 80 percent of the people with developmental disabilities who were receiving state services — about 2,700 people — were placed in segregated sheltered workshops and facility-based programs.

In addition, only about 5 percent of the young people with developmental disabilities leaving secondary schools from 2010 to 2012 went on to jobs in integrated settings — even though many were capable of working in the competitive workplace.

Federal and state officials said they had received a positive response from businesses to the reforms. They said that the U.S. Business Leadership Network, a network of Fortune 500 companies, and Walgreens would sponsor a business summit meeting in Rhode Island in June to explore ways to expand the training and employment of people with development disabilities.

Ms. Samuels explained that those employed in sheltered workshops would be exposed to other opportunities, but would be allowed to remain in the workshops if that is their preference. “We are not shutting them down,” she said.

Mr. Porcelli, though, has moved on to a new job, doing office work and some computer training at Automated Business Solutions, a small business in Warwick. He said he enjoyed being in competitive employment because, he said, “I feel more accomplished.”

What a pile of horse shit.

The money that was spent on sheltered workshops is to be redirected to “encouraging” services, and “exposing” opportunities - in a world where most low cognition jobs have vanished to automation and globalization - and they aren’t coming back.

Will the cognitively impaired get special positions in the long, long lines for minimum wage high stress Walmart jobs? How well will that be received? Will ADA style lawsuits mandate the restoration of mail rooms, human staffed factories, filing cabinets and gas station attendants?

Oh - and the workshops “won’t be shut down” after the funding is “redirected”? I have no words for that.

This is the second coming of emptying psychiatric institutions — and dumping schizophrenics to die on the streets.

Yes, we need more employment options and vastly better transition and lifelong learning programs — but closing sheltered workshops for the cognitively disabled is not the answer.

The end of High School, the end of dreams

Parenting #1 is river canoeing. There are moments of flow, even quiet times. And then there are the rapids and the waterfalls. Now we can hear another waterfall in the distance, perhaps the biggest so far.

#1 is finishing 10th grade. He loves books and school. He is proud when he makes the honor role. He loves his biology class. He wants to take a heavy course load next year. He knows the colleges he wants to attend.

#1 reads at about the fourth grade level. He struggles to solve exercises involving clock time. He can do simple arithmetic. He is not going to go to attend college, he won't get a High School diploma, he will get our school district's equivalent of a certificate of completion.

His cognitive disability means he is not fully aware of the gap between his abilities and his dreams. Disney, it seems, is wrong; it is not enough to believe in yourself. He has thought of himself as a good student, somebody who might help teach 9th grade students. He applied to join his school's leadership team (and, to the school's shame, was ignored).

That is the shape of the next waterfall. He is going to discover, in a way he cannot deny, the truth of his circumstances. This comes to most of us, in one form or another -- but not usually in such a harsh and brutal fashion.

I have started to discuss this with him. I have to somehow explain that no matter how hard he tries, he cannot do what most people can do. It is not his fault, it is not something he can fix by working harder, he simply cannot do this. It is disability without the inspirational movie ending.

Somehow, in the midst of crushing all his hopes and dreams, we have to give him something else. We don't know what the hell that is. Sometimes I think I'll start a business he can work with me on. Mostly I think I'm delusional about that.

This is not easy.

See also

• High school tips (grade 9) 11/2011
• Special education vs. standards based grading: What are grades for? 9/2012
• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings) 10/2012
• Transition and employment - notes from a Minnesota presentation 4/2013

Transition and employment - notes from a Minnesota presentation

The special needs roller coaster starts to speed up again in 10th grade.

Tenth grade is when #1 is no longer encouraged to join mainstream sports teams, perhaps because the coaches are no longer educators. They are competitors. Tenth grade is when the gulf between him and mainstream students he admires becomes too big for him to ignore, and there's sorrow in his heart he does not understand and cannot express. It's when the focus changes from an educational track to an employment track.

Employment was the focus of a meeting I attended today. I won't try to summarize what I heard, instead I'll summarize what I think is happening in Minnesota and probably nationally. My summary has only a passing resemblance to anything I heard today, it's my own personal impression for which nobody bears responsibility.

To keep this short, so I can get to sleep, I'll do this in a series of bullet points.

How things used to work in the 70s-00s.

• After deinstitutionalization in the 1970s money was made available for community care of disabled persons in the form of waivers:
• DD: Developmental disorders
• CADI: Mental health (schizophrenia mostly)
• CAC: Severe medical (vent dependency now, once might have been more)
• BI: Traumatic brain injur (this may be more recent)
• The waivers were used to pay for various forms of what was once called Supported Employment for developmentally disabled adults whose primary income came from Social Security Disability.  Supported employment and related activities included:
• DTNH employment: piece rate and workshop activities that paid less than minimum wage. Aka "Sheltered workshops" or "Work Centers"
• Pre-Voc programs: ?
• Day Programs
• Adult day care
• Regular employment with funded supports and supervisors (and perhaps subsidies to employers?)
• Schools provided work experience programs and work rotation during transition (typically 19-21)
• These programs were administered by agencies (non-profit usually) sometimes known as "Employment and Alternative Service providers" and "Supported Employment Service (SES)" providers and typically organized by County though some provide services in multiple counties. (See 2009 Access Press directory and the Minnesota Habilitation MSP index)
• Kaposia
• ProAct (A friend recommends them)
• Center for Supported Independence 
• East Suburban Resources
• Lifetrack Resources
• Lifeworks Services
• Metro Work Center Inc.
• MRCI WorkSource
• Rise
• TSE-Inc
• Homes
• AccessAbility
• Merrick
• WorkAbilities
• Zenith Services

How things work in the 10s.

• There is much less money available to support employment. In particular, waiver lists are growing. To receive waiver support now may require homelessness. [1]
• With "Reform 2020" services will be less county specific and more state delivered
• Instead of "Supported Employment" we have "Customized Employment". This is employment that is in some way adapted to the special needs population though it is now used for any adjusted employment including part-time work. It is typically but not necessarily minimum wage employment and it is often part-time.
• There does not appear to be any direct financial or tax benefit to employers who do this, though adults on social security disability may quality for vocational programs like "ticket to work" and there are some SSI incentives that provide support.
• There may or may not be some form of external work support for non-waiver disabled (this is fuzzy)
• We have about 1-2 years of early experience in MN with Customized Employment and no data at all on how well it is working particularly in the new post-waiver era.
• There appear to be two paths to Customized Employment which roughly follow the adaptation vs. modification educational tracks.
• More disabled (educational modification, non-diploma track, social security disability): This tracks makes use of services like Kaposia to assist with finding job opportunities. These services are not available privately, they still rely on funding sources but seem to be able to find money from vocational rehab or county funds even when waivers are not available - at least at this time. At least some of one of these services claim good placement records "0 reject model" and they can be impressively creative.
• Less disabled (IEP, educational adaptation, diploma but not college): This track does not use "Supported Employment Services". This depends entirely on parents to arrange for networking, "informational interviews", employment training, work experience training and so on.
• IEP work experiences provided by school districts post-graduation (19-21) are being reworked and are less encouraged. It's not clear how well current grade 11/12 programs work.
• Employment opportunities do seem to rely on the kindness of local small businesses and a few large employers. Workers in the system prefer not to share employer information, perhaps for fear of overloading them.

It reminded me of a presentation I attended some months ago on housing services for the Minnesota special needs population. We learned that the old system was gone, the money was missing, and it was all up to parents now.

 

[1] Parenthetically, the prison-industrial complex is thriving, so we may have outsourced care of the mentally ill and developmentally disabled to the prison system. 

See also

• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)
• Be the Best You can Be: Special education vs. standards based grading: What are grades for?
• PACER - Day Training and Supported Employment Programs www.pacer.org/parent/php/PHP-c199.pdf (Excellent summary)
• PACER - Resources for Families on Preparing for Employment
• Lifepages - Services - Search Results: Dated but one of the few references I could find
• T-TAP: Strategies: Customized Employment: Q&A
• DB101 Minnesota - Home
• Directory of Organizations for Persons with Disabilities - Employment
• State_Rehabilitation_Council_Report Center Based Employment.pdf 2011 - recommended
• Minnesota Habilitation Coalition: Industry group representing employment provision services
• Social Security - working while disabled. pdf - pamphlet for general disability
• Social Security Online - Work Incentives - Detailed Information
• Social Security Online - The Red Book - A Guide to Work Incentives the authoritative reference for SSI disabled special need adult work

Nature November 2011: Special issue on Autism, Mottron's view of the employed autistic and Calgary's Ability Hub

The Nov 2011 issue of Nature (v479, n7371, pp5-144) focuses on "The Autism Engima". It includes 3 reviews/news articles and 1 research article:

• Special issue on neuroscience: The autism enigma - introductory editorial
• The prevalence puzzle: Autism counts - a thorough 'news' review of the prevalence of autism. I came away with the impression that novel environmental changes might account for 0-20% of the increased diagnostic prevalence of autism, but that most of it is better diagnosis and reclassification. Studies of adults suggest that autism was far more common than most imagined -- these children were invisible.
• Scientists and autism: When geeks meet - autistic traits may be advantageous in some careers, but the hypothesis that assortative mating accounts for autism clusters doesn't sound too solid.
• Changing perceptions: The power of autism - this one is a research article, and is behind a closed-science paywall. Science Daily has a summary: Autistic people superior in multiple areas: Scientists must stop emphasizing autistics' shortcomings, expert urges.

I followed up on the Mottron article and came across an excellent National Post article ...

Autism’s advantages: Researcher says autistics need opportunities more than treatment | News | National Post

Because autism — characterized by repetitive behaviours, restricted interests and preoccupations and difficulties in basic social and communicative behaviours such as eye contact, intonation and facial expressions — is a lifelong disorder, parents can be caregivers for life. But as the population ages and parents get sick and die, there’s an even greater need to integrate people with autism into society by giving them the skills they need to become independent adults, experts say. Children tend to be the focus, autism organizations admit. Adults are overlooked.

“After 18 years of age they’re not kids anymore and they’re forgotten,” Dr. Mottron said over the phone this week from Lyon, France. “People have a cliché, that if he’s autistic you can do nothing with him. That’s not true. The fact that you have some terrible autistic life is not representative of autism in general.”

In his commentary, Dr. Mottron cites recent data, including an epidemiological study from Korea published this June that found the disorder is three and a half times more prevalent than common statistics suggest. “Among these 3.5%, about two-thirds have no adaptive problem at all,” he said, meaning they function relatively normally in society and should be able to take on a job.

... Ms. Dawson said it’s unfair to categorize someone as low functioning or high functioning. She and Dr. Mottron believe many tests that are used to determine level of functionality are inappropriate. Less commonly used tests such as Raven’s Matrices, which doesn’t require verbal instruction to complete, can actually reveal very high intelligence levels.

“To estimate the true rate, scientists should use only those tests that require no verbal explanation,” Dr. Mottron wrote in his paper. “If we were to measure the intelligence of a person with a hearing impairment, we wouldn’t hesitate to eliminate the components of the test that can’t be explained using sign language; why shouldn’t we do the same for autistics?”

Ms. Dawson said an entire session at this year’s International Meeting for Autism Research in San Diego focused entirely on finding out how to measure the intelligence of non-speaking autistics, who might be considered low-functioning....

... The founder of Specialisterne, a Danish company that has helped more than 170 autistics find work since 2004, said it’s OK to start such a movement with people who would be considered higher functioning.

“If we will be able to run a business on the skills of medium- or low-functioning, I’m not sure,” Thorkil Sonne said from Copenhagen. “But everyone deserves a chance to feel that they can produce something that others appreciate.”

... the Sinneave Family Foundation’s Ability Hub, a 17,000 square foot centre on the University of Calgary campus dedicated to helping people with autism gain life skills and work training...

... The Ability Hub opened in October and is just one of a few new centres devoted to getting autistic adults ready for the real world, said its executive director, Dr. Margaret Clarke, who has spent a career working with people who have autism — the Ability Centre is under construction in Whitby, Ont., and the Pacific Family Autism Centre to be built in Vancouver.

“Around the world we know that average lifetime cost to society to an individual with autism … is $3.4-million per individual. Three-quarters of those costs are incurred in adulthood largely around services to enable and facilitate individual vocations,” Dr. Clarke said, adding that some data suggests every dollar you invest in pre-vocational programming for people gives you a $7 return. “I actually think that number is going to be even better in the area of autism because individuals with autism have a great capability to learn, they’re just often held back by specific skill deficits or not given a chance.”

GettingHired - a job search site for persons with disabilities

GettingHired - Jobs for Disabled is a job search site for persons with both physical and cognitive disabilities.

I've added it to my custom search engine, which, Google tells me, now indexes 17 million pages.

Transition Tool Kit from Autism speaks

Autism Speaks [1] has put together a Transition Tool Kit targeting families with special needs children ages 14-22. The goal is to support transition into the community when school services end.

The kit is downloadable, but as best I can tell the kit is the same set of PDFs that are found on the above page. An "online appendix" is a curated set of links to additional information.

The kit is pretty generic, because state rules vary [2]. Autism speaks has state resource guides (ex: MN) with sections on adult transition. Minnesota's data is a well done list, and it includes a state specific transition guide.

I'm including all of MN specific information in my MSP special needs custom search engine.

[1] In the past they've been associated with the immunization obsessed, but I wonder if they're trying to get clear of that crowd.
[2] At some point, do we relocate to a state with better services? What happens when millions of retired adults begin driving their mobile homes around the nation, desperately seeking dwindling services for their adult children? Just wondering.

Minnesota Online Special Needs Directory

I just found this online directory: Minnesota Online Special Needs Directory: Twin Cities Metro Area. It's referenced by the Wrightslaw Yellow Pages for Kids with Disabilities (MN).

It's published by Jenzi Silverman at the UMN Dept of Educational Psychology. It's very plain -- there's not even notation of last revised date. I don't find the organization terribly useful, it's crying out for an embedded Google search box, but it's the only place I found an (obsolete!) link to the interesting Eagan ProAct agency that works on employment skill development.

Clearly I need to create a custom google search for MN special needs resources and show Jenzi how to embed it in her directory page. More on that soon (I hope).

Residential occupational training for special needs adults - Eastern New Mexico Special Services

Eastern New Mexico university offers a residential training program for adults with special needs. They are part of the western educational region, so it’s local tuition for neighboring states.

Special Services - Occupational Training Program

The Special Services Department provides services to students with disabilities. We maximize educational and career opportunities, assist disabled students with integration into the university community, and accommodate those students with services needed to allow full participation in all programs. Our certificate program is designed for students who, with appropriate training, are able to obtain positions in competitive employment. We currently have a three semester program, with a second year being developed. This second year will focus on independent living skills and employment.

Entrance Requirements:

A vocational evaluation less than 2 years old. (Either call our office to schedule, or obtain one privately).
Complete documentation and full disclosure of medical/developmental disabilities.
18 years of age or older.
Ability to self-medicate with no assistance.
Independently awaken to alarm/attend classes regularly and on time.
Maintain appropriate hygiene/laundry/dorm room.
Demonstrate effective communication skills and appropriate behavior.
Meet minimum entrance requirements for the selected study discipline.
We have a zero tolerance for any drug/alcohol use and students will adhere to the Standards of Behavior as outlined in the campus handbook.

Certificate of Occupational Training Courses:

Vocational classes and practicum’s/Job seeking skills/resumes
Independent Living I, II, III and labs. Advanced IL for second yr.
Recognizing Conflict/Conflict Management
Physical Education (adapted)
CPR/First Aid
Driver’s Education (optional) with lab
The College Experience

The Special Services Occupational Training Program leads the student to a Certificate of Occupational Training (COT). There are several career programs available (see course catalog). Vocational training emphasizes hands-on instruction, including 12-20 hours per week of on-campus classroom, lab, and off-campus practicum experiences. The technical skills taught in each career field prepares the student for competitive employment in that discipline.

Occupational Training Areas:

Auto Mechanics
Certified Child Care Attendant
Floral Design
Food Services
Certified Nursing Assistant/Home Health
Office Skills
Refrigeration and Air Conditioning Maintenance
Sanitation, Building Maintenance, and Grounds Keeping
Welding
Veterinary Assistant

Special Topics:

Animal Healthcare
Stocking and Merchandising
Dorm Life & Independent Living

Students are provided opportunities to build positive social skills and demonstrate appropriate social behaviors by living at Sierra Vista Village. Although supports are in place to assist our students with the social challenges of living on-campus, all students are considered adults and are expected to adhere to university policy and standards of behavior. Our department has staff available between 7:00 a.m. – 10:00 p.m. Monday through Friday to assist students in their transition to dorm life, learning domestic skills, and making good decisions now that they are living independently.

Students and parents must remember: our educational program is geared toward students with disabilities; however, all students are adults, and must be able to live in the dorms and attend all classes and work sites with no assistant. Each student is expected to take responsibility for their educational and personal success or failure, and demonstrate maturity and behaviors appropriate for a college campus.

Although second year students are allowed to live in the apartments on campus; first year students live in the dorms.

Independent Living classes and labs are required courses for the COT program. In addition to labs, students choose a one hour elective from the following as part of the lab requirements:

Art
Sign Language
Theatre
Support from the Special Services Department:

Academic and tutoring support is provided as needed.

Computer Labs are open for students to use
Limited health concerns are seen by our Certified Family Nurse Practitioner.
Campus Security 24/7
Social Events

Resident activities are held, such as movies, dances, B-B-Q’s, and day trips. We also have Special Olympics and the snow skiing club.

Residence Hall

Our students gain independence as they display responsibility. Staff supervision is active until curfew and, as with any college student; our student’s are expected to adhere to dormitory rules and regulations:

Curfew: 10:00 p.m. M-TR - 12:00 a.m. FR-SAT
Sign in/out log
Weekend check out
Weekly room inspections
No opposite sex visitation in rooms
No private transportation for the first semester
Graduates

Our career training allows students to learn marketable vocational skills, as well as practical life and independent living skills. We pride ourselves on the (avg.) 75% employment placement of graduates. Graduates leave our campus with verification of training (COT), certifications, valuable life experiences, and positive personal growth.

Verification of Training

COT from Eastern New Mexico – Roswell, an accredited university.
Checklist showing technical skills mastered in the chosen discipline.

The web site has additional materials …

• Special Services - Occupational Training Commonly Asked Questions – skills taught, employment goals
• Special Services – Staff

Google suggests an article marketing a vocational assessment program for additional background  …

Marla Wittkopf is the vocational evaluator with the Special Services Department at Eastern New Mexico University-Roswell (ENMU-R) in the state's southeastern area. Marla has been with ENMU-R for seven years and is a tenured faculty member at the institution. The Special Services Department is part of the Developmental Studies Division, and ENMU-R is a branch of ENMU-Portales. This past academic year, Marla tested 115 students, most of whom subsequently enrolled in the Special Services Occupational Training Program.

The mission of Special Services is to provide occupational and social skills training for  students with disabilities who come from across the United States. Although the program can accommodate students without disabilities, the great majority of them have various disabilities. Many have learning disabilities, and throughout their lives they've been constantly told about all the things they can't do.  "It's neat to see their reactions when we help them realize all the things they can do," said Marla.

The program offers students vocational evaluations, counseling, and training within a work setting of their choice in the Roswell community. If program graduates decide to remain in the Roswell area, Special Services staff are often instrumental in aiding them in finding  employment in their chosen occupations.

The Special Services program is unique in the country in that Special Services students live in dormitories on campus, just as students without disabilities do. "They get the real college experience that way, and it also challenges them to learn important new skills," said Marla. "Their days are broken up into two parts, classroom work in the afternoons, and practicum job site training in the mornings. Living away from home in a dorm setting is a big, big change for most of them, and they take classes to help them adjust to living on their own. They take such courses as independent living, conflict resolution, and adaptive physical education."

At graduation, students are awarded certificates of completion that list all of the work skills they have mastered--at least 75% of the job's specified skills. Seventy percent of those who begin the program graduate, and about 75% of the graduates are successfully placed in jobs after they complete the program. "And often the three semester program builds their self-confidence to the point that they want to continue their formal education," said Marla. "It serves as a springboard for students who want and are able to earn their Associate's degree."…

… Many of the students enter the program with specific occupational goals in mind, and it's often the case that their goals are unrealistically low or unrealistically high. "It's not unusual for them to come in saying they want to be physicians or lawyers. Pro3000 and the work samples help them see very clearly where their abilities are compared to the occupational requirements…

… "Many of our students come in having been beaten down all their lives, people always telling them all about what they can't do. Of course they're discouraged," Marla said. "I stress to them that everybody has their own, personal ways of doing things, and we all have areas of strengths. There's no one 'right way' of doing things. We help students discover what they can do. We also provide assistive devices and adaptive procedures  (accommodations) where needed. We view those as the equivalents of the reasonable accommodations employers are required to provide disabled workers under the Americans with Disabilities Act….

Different minds, Different paths

In most anything to do with thinking, my eldest son and I aren’t in the same league.

For now. In 25 years, if I’m still living, we might be a lot closer.

Even so, every so often, he solves some problem better than I can.

It’s not only the near-savant visual processing abilities that help him find his (frequently) lost brother. Nor his exceptional navigation skills that have corrected my driving since he was about 3 years old. He also has an unusual ability to come up with good solutions to sequencing/routing traveling salesman type problems. That might be why, when he’s in the mood, he’s very good at the game ThinkFun RushHour (traffic jam).

I was reminded of that this morning on the way to work. We were chatting about how we’d manage some family routing issues on the way to work, and, seemingly without effort, he gave me the answer I’d missed.

So my challenge, as ever, is to figure out how he can leverage what he’s good at, while managing the things he can’t do. Being the best he can be …

A grave problem with 529 plans and special needs children

Many people fund 529 plans to support a child's post-secondary education or training.

Please consult your attorney before acting on anything here, but our understanding is that this is a problem for special needs children.

The trouble is that if a child has 529 assets in their name when they turn 18, the assets over $3000 mean they will not qualify for disability associated medical assistance until the assets are depleted.

Instead some advisors suggest the creation of a supplemental needs trust (not a special needs trust). These can shelter funds for a special needs adult so that disability and medical assistance support is not impacted.

The supplemental needs trust can also fund education. For example, one could purchase tax free municipal bonds in the trust. The fund trustee, usually a parent or family member, can then use the funds to pay for education or training.

Some employers will also allow certain high income employees to defer compensation. It may be possible to then shift the deferred compensation to the fund. This definitely requires attorney review!

If you already have a 529 plan assigned to a special needs child, it can be shifted to another family member before the child turns 18.

To repeat -- you should not act on anything in this post without consulting a very experienced financial consultant or attorney. For example, Wikipedia has conflicting statements on the topic.

Employment for special needs persons – hints from the classification of galaxies

The  Galaxy Zoo uses humans as “computers”. We’re very good at grouping things by resemblance, so hobbyists are used to group images of galaxies into “types”

... With your help, we've been able to collect millions of classifications, with which to do science faster than we ever thought possible...

…If you're already familiar with basic Galaxy Zoo analysis, click here to read the instructions and click here to take part. Galaxy Zoo 2 will go live in the near future featuring a much more detailed classification system, while further off we plan GalaxyZoo 3 with lots of exciting new data...

One amateur astronomer made an important original discovery.

Some persons on the autism spectrum with a personal interest in astronomy might be interested in the Galaxy Zoo today, but from a special needs perspective I’m mostly interested in where things might go in the future.

There will likely be tasks that humans do much better than computers for at least a few years. A few decades, I hope.

Some of these tasks will be open to people with focal cognitive disability. These disabilities are often offset by domains of relative, and even, absolute, strength, such as rapid pattern recognition in the card game “Set”, or rapid discrimination of large amounts of visual data. Tasks similar to the Galaxy Zoo classification, but with payment attached, might become an option – in time.

Incidentally, the first “computers” were humans. Even into WW II men and women did computational tasks by hand and were known as “computers”. (Engineers, of course, used slide rules until the late 1970s, but they weren’t called “computers”.) So this is a “back to the future” story.

See also:

• Outsourcing your crowd sourcing
• Distributed transcription using Amazon’s Amazing Turk

Microsoft's Guardian Angel patent - a sign of next generation support

The bad news is that Microsoft's lawyers consider something as obvious and inevitable as "Guardian Angel" to be patentable. America's current software and process patent laws are insane. At a minimum persons evaluating patents need to be well grounded in science fiction.

The good news is that this is something I have been hoping would emerge sooner rather than later. The value for special needs persons, including the majority of us who develop special needs in our 70s and 80s, could be enormous -- especially when combined with ubiquitous robotics.

United States Patent Application: 0080082465 (Microsoft Guardian Angel)

An intelligent personalized agent monitors, regulates, and advises a user in decision-making processes for efficiency or safety concerns. The agent monitors an environment and present characteristics of a user and analyzes such information in view of stored preferences specific to one of multiple profiles of the user. Based on the analysis, the agent can suggest or automatically implement a solution to a given issue or problem. In addition, the agent can identify another potential issue that requires attention and suggests or implements action accordingly. Furthermore, the agent can communicate with other users or devices by providing and acquiring information to assist in future decisions. All aspects of environment observation, decision assistance, and external communication can be flexibly limited or allowed as desired by the user.

Many persons with cognitive limitations can operate well under ordinary and predictable circumstances. Any disruption to routines, however, can be overwhelming and dangerous. Technology of this nature can make a broader educational, work, and personal life possible.

The candidates and disability policy

Crooked Timber's Michael Berube has summarized the disability policies of the three contending candidates:

Crooked Timber -- Disability and Democracy.

McCain's policy is fairly simple ...

... Yes, well, McCain’s disability policy is much easier to summarize: (a): we need to cut costs; and, following from (a), (b): don’t become disabled...

Clinton does a very good job ...

... A Hillary Clinton Administration would be quite good on disability/ health and disability/ employment, and generally good for my kid – this one, not the college senior who turns 22 today...

but her web site does a poor job of displaying her disability policies.

Obama's plan is "... remarkably enough, at once broader and more specific than Clinton’s". For example:

... proposes “a comprehensive study of students with disabilities and transition to work and higher education” – something that (a) has never been done and (b) is of great interest to teenagers with disabilities and their loved ones. “As president,” we’re told, “Barack Obama will initiate such a study and task his Secretary of Education with researching: the barriers that keep students with disabilities from seeking and completing higher education; the barriers that prevent students from making a direct transition to work; the extent to which students with disabilities are able to access loans and grants; reasons college students with disabilities drop out at a higher rate; and best practices from schools that have effectively recruited and graduated students with disabilities that can be implemented more widely.” This is, as you might imagine, a (cough) special interest of mine. But that’s not just because I have a 16-year-old with Down syndrome. In recent years I’ve had many fine students at Penn State – twenty-year-olds with dyslexia, or Asperger’s Syndrome, or arthritis, or mild cerebral palsy – request “reasonable accommodation” from me on final exams. And I’ve been amazed and appalled at how few many of my colleagues (here or elsewhere) seem to believe that they’re under no obligation to provide reasonable accommodation for everyone. (Guess what? If you teach in the United States, you have that obligation! It’s a real federal law!) So I’m thinking that “a comprehensive study of students with disabilities and transition to work and higher education” might not be a time-wasting exercise for disabliity-policy wonks. I’m thinking that it might actually make a world of difference for students with disabilities – in high school, in transition, and in college...

Among the topics Berube reviews are:

• limitations on the ability of insurers to discriminate on the basis of preexisting conditions
• fudning of IDEA (the grossly under-funded Individuals with Disabilities Education Act).
• federal employment support for persons with disabilities
• Tom Harkin's ADA Restoration Act (overturn Supreme Court decisions that have limited the ADA's scope).
• Genetic Information Nondiscrimination Act (GINA), which prohibits discrimination on the basis of genetic information by employers and health insurers. (Tom Coburn has blocked passage of this in the Senate).

The bottom line of course is that either Hilary or Obama are light years better than McCain for persons with disabilities and their supporters.