Explosions and anxiety: Adult special needs life is a tough haul

My 26yo son, "#1", is pretty solidly in the 3-4th (bottom) percentile of cognitive abilities. It's a cognitive continuum of course; what's true of the 3rd percentile can also be true of the 10th or the 20th -- especially when lack of sleep or alcohol is involved. So this isn't just about special needs adults. It's something useful to understand for tens of millions of Americans.

The other day he exploded. No harm came of it, except to him. It's a behavior we've known from childhood though it's only with time we came to understand how closely tied it is to his anxiety.

It happened during an ice hockey game. We play together at local pickup games. He's a good mid-level adult hockey player, a step above me and our usual pickup skaters, but he's not a fitness guy. He gets tired towards the end of a game and, unlike a neurotypical player, he doesn't push himself. He just takes it easy. (This logical but socially wrong behavior isn't unique to #1.) This can irritate teammates who expect him to perform well.

In this case a teammate made a mildly inappropriate (for this kind of hockey) criticism of #1s lackadaisical play. Once upon a time I'd have made a similar comment, but I've learned it doesn't work. What works is to praise the things he does well. (This simple principle took me forever to learn and apply.)

I get those kinds of comments myself from better players sometime -- but I enjoy them.  It means I can guilt my critic into being a reluctant game-long coach. (Sadly this only works once, they don't really want to coach.) Or, if it's late in the game, I'll laugh and say "yeah, I suck". 

That's advanced stuff. In this case #1 was tired. He exploded with a red faced rant and various scary seeming threats. I was nearby though, so I sat between him and his critic and explained to the poor guy that my son was a special needs adult and that I'd sort things out. #1 hates to hear himself described that way (you would too) but the moment passed for everyone but my son. For him these things endure.

I've learned not to criticize these behaviors -- for him it's all about extinction-reinforcement. I was able to walk him through how I'd have handled the comment. It wasn't over though. He's been kind of wreck since. He's complaining of a variety of physical symptoms consistent with somatization (or some horrible disease that we'll feel very bad about -- my wife and I are both physicians). It's hard to understand his internal reasoning but his behavior is consistent with shame, guilt, and a deep fear of exploding again. His usual response to an episode like this is to replay it for years and avoid the setting. I don't know if he'll continue to do the pickup hockey. For now we're managing what we think is somatization (and not, say, some post-COVID neuropathy or lymphoma [1] or whatever) and working on resetting him.

Not a good day, but also not avoidable. But it could have gone much worse. It does go much worse. A lot of men with limited cognitive or emotional control can melt down like this. If police are involved and aren't at the top of their game it can escalate very badly. Even if police aren't involved it can turn into a physical fight with all of the problems that come from that. Most special needs adults, and most men, don't have a 60+ neurotypical father to sit between them and the guy they are excessively angry with.

It's a hard world out there. If you're one of the lucky guys with good emotional control and understanding it might help to know how this goes. If you're a cop -- I hope you're getting the autism/special needs training now being introduced into high performing police forces.

- fn -

[1] That's physician humor. Any symptom can always be early lymphoma.

See also:

• The Explosive Child and other books (2007)

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.

Abercrombie & Fitch humiliation of autistic child - no apology

There's a sickness in the culture of this clothing retailer. Emphases mine.

Abercrombie & Fitch fined in MOA discrimination case | StarTribune.com

A judge ordered retail giant Abercrombie & Fitch to pay $115,000 for discriminating against a 14-year-old autistic customer at its Mall of America store.

The civil penalty, the largest of its kind in at least two years, came four years after store employees refused to let the autistic teen join her older sister in a fitting room because of the clothing chain's anti-shoplifting policy. The store refused to relent even after the sister, and later the girls' mother, explained that the 14-year-old couldn't be alone because of her disability.

The confrontation humiliated the girl, who testified that the incident made her feel like a "misfit."

"She was singled out and required to hear her sister and mother repeatedly ask for accommodations based on her disability, in front of a long line of customers, at a store that markets itself to young people as a purveyor of a particularly desirable 'look' " administrative law judge Kathleen D. Sheehy declared in her ruling.

When several complaints to the company were ignored, the girl's mother, Elizabeth Maxson of Apple Valley, took the case to the Minnesota Department of Human Rights. The investigation encountered fierce resistance from Abercrombie & Fitch, a New Albany, Ohio-based company that posted $3.5 billion in revenues last year. The company even denied that the girl, identified only as M.M. in court documents, had a disability until the first day of the administrative law hearing in April. She was diagnosed as autistic at the age of 2.

In her ruling, Sheehy found that Abercrombie & Fitch violated the Minnesota Human Rights Act and ordered the company to pay the girl $25,000 for mental anguish and suffering. The company also was ordered to pay $25,000 to the state as a civil penalty, $41,069 in attorney's fees, $20,441 to the human rights department for its expenses and $3,753 in other expenses.

Abercrombie & Fitch also was ordered to post signs in its seven Minnesota store explaining that disabled individuals should seek out a sales associate to obtain an exception to the company's policy allowing only one person in the fitting room at a time. The company also must provide an hour of training for all employees in Minnesota who interact with the public to make sure they understand how to help disabled customers.

Abercrombie & Fitch has appealed the fine to the Minnesota Court of Appeals.

Four years. That's how long the Maxson family had to fight this, while Abercrombie's lawyers sat back and waited for them to give up. Even so the fine is pathetically small; for a company this size a meaningful fine would be on the order of $100 million, not $100 thousand.

Even so, Abercrombie and Fitch not only fails to apologize, they appeal the fine. Minnesota clearly needs much bigger fines.

This is the same company that features this diversity statement on their web site:

... Developed and launched a comprehensive training curriculum. It includes e-learning based programs focused on diversity awareness and skill building, as well as, an innovative and provocative approach to education that we call reality-based learning. This approach is unique in that we base the learning on real-life issues that may take place in our store environment and reflects our work culture. The training scene is enacted by actors/inclusion experts during the training program, so that we can generate an interactive dialogue about how to solve relevant management issue...

Of course this statement follows a 2005 class action lawsuit for discrimination. Abercrombie and Fitch paid out $50 million for that one, but it obviously didn't touch their corporate culture.

This is one retailer we can do without. Don't shop there.