Catch 22: Special needs students in transition programs can't take community college classes in Minnesota

We’ve discovered  an interesting “Catch-22. It applies to Minnesota but may be common elsewhere.

In MN a student entering a state funded transition program cannot do courses at a community college — even if they pay for them directly and even if they were doing them while in High School through Minnesota’s PSEO program.

The reason is that Community Colleges require a High School diploma, but transition programs require that a student not have a High School diploma [1]. While in High School students may attend Community Colleges for advanced courses through programs like PSEO (MN), but not after finishing High School. Once a student is in a transition program they may likewise, through the transition program, be eligible to attend selected community college classes.

This catch-22 won’t snag many students. Most students entering transition won’t have been doing PSEO classes or be interested in most community college courses. It may, however, catch autism-spectrum adults with relatively strong academic skills. Our #2 falls into this category.

We’re sorting out our options, but wish we’d known this in advance.

- fn -

[1] In practice though either adaptation or modification a MN student with an IEP (includes “special needs”) will typically have the credits to graduate. To maintain eligibility for transition program education for ages 18-21 the student may attend graduation, but the diploma is not placed in their hands. So, they finish High School at age 18, but they don’t actually graduate. This bizarre ritual must have its roots in the slow evolution of law and regulation. It might, for example, be rooted in an era where students “failed grades”; perhaps states chose 21 as a maximum age that anyone could spend in public high school regardless of grade. When post-secondary transition programs were created perhaps they were subsumed into this framework. I’m only speculating, but it would be consistent with how structures of law and regulation evolve.

Minnesota adoption assistance and disability support

We have been told, and I think this is true, that if a Minnesota child with a cognitive disability receives state adoption assistance, which includes medicaid coverage it’s not possible to get disability support until the adoption assistance ends at age 21. 

It appears to be an unwritten rule. I wonder if in some cases it would be better, with a special needs adoption, to forego the adoption assistance and take the disability path instead. I’m sure this exclusion is an unintended consequence.

The transition from medicaid coverage under adoption assistance to medicaid coverage under the disability program is not instantaneous. There will be a gap. Moving from childhood disability to adult disability is not fun.

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

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.

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.

Special needs in Minnesota - notes from an ARC and family sponsored meeting

I joined a meeting tonight hosted by Arc Minnesota [1] which was both an opportunity to learn from the work of the local Bender family and a chance to chat with a few local politicians (all of whom I voted for of course).

Unfortunately I was delayed and missed part of the meeting, but I'll share some of the issues that came up. There's much more on these topics in a post from last year - Transition and employment - notes from a Minnesota presentation.

•  I heard some good things about the Legacy Endeavors, I think they'd be categorized as a "supported Employment Service Provider" though I'm fuzzy on the divisions.
• Arc is pushing for a 5% increase in reimbursement for aides and other caregivers in the special needs system. They've gone a long time with no salary increases.
• The ACA is reducing or eliminating the "parental fees" associated with buying into medical assistance (TEFRA) (!)
• Minnesota's Olmstead plan, which came out of a court settlement following the meto case, is starting to turn into laws. There's a focus on licensing and quality improvement for provider organizations and moving towards individual annual budgets and "increased flexibility" [2]. A long promised self-directed support option for personal are attendants might become real.
• There's some legislative pressure to limit use of family members as paid Personal Care Attendants due to vague fears of fraud and abuse. This practice is most common amongst 'communities of color' . The common pattern in special needs services is to put in place so many 'fraud and abuse' safeguards that programs become almost useless.
• The Federal move to limit use of group homes realized most of its money savings from reducing 24 hour surveillance costs.
• Minnesota schools are have accelerated inclusion programs in late High School. Personally we haven't noticed any changes - certainly not any improvements. (For example.)
• States vary in how they deal with maintenance of disability benefits when income rises above poverty level. Minnesota is particularly harsh -- ensuring special needs persons with disabilities will be just barely out of federal poverty. There didn't seem to be a lot of energy for changing this.

[1] I believe The Arc used to be A.R.C, and the R stood for what you might expect. Now it's an "Arc" as in the curvy thing. Incidentally, The Arc has a legislative blog. I had no idea - I've added it to the MSP special needs search engine.

[2] "Flexibility" can be a euphemism for "free to do whatever you want and here's a ticket out of town". We'll see.

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

Why transition services are a bit of a mess in many states

From HuffPo (emphases mine)

Special Education Services After High School Uncoordinated, Unmonitored, GAO Finds

... At a recent leadership conference for the Individuals with Disabilities Education Act, Melody Musgrove, director of the U.S Education Department's special education initiatives, said she wants to make services focus on the needs of students rather than the law's technical requirements, according to Education Week. While compliance has been key, the test scores of special ed students haven't improved. So the department decided in March that it would cancel expensive compliance visits to 16 states next school year.

Transitioning out of high school is part of that picture. The current compliance model looks at what students want to do after high school, but not what actually happens. A September 2011 report from the National Center for Special Education Research found that slightly over half of teenagers with disabilities pursued post-secondary education, compared with 62 percent of their peers.

Laura Kaloi, who directs public policy for the National Center for Learning Disabilities said transition planning can help get kids with disabilities on an equal footing with their peers.

As you can tell from the excerpt, the article is a bit choppy. That might just reflect the incoherence of the Federal effort. "Compliance has been key" and "cancel compliance visits"? Looks at what students want to do (play professional soccer) but not what happens (watch TV)?

More importantly, exactly how is any program going to put a young adult with an IQ of 65 on an "equal footing" with someone who has an IQ of 100?

I hope the incoherence is in the journalism, but I fear it's in the policy.

Alternative housing for special needs adults - the MEDCottage

This was setup for elderly parents, but there are obvious implications for special needs adults (emphases mine)...

In the Backyard, Grandma's New Apartment - NYTimes.com:

.... a MEDCottage — a prefabricated 12-by-24-foot bedroom-bathroom-kitchenette unit that can be set up as a free-standing structure in their backyard. It’s more than a miniature house — it’s decked out with high-tech monitoring and safety features that rival those of many nursing homes....

... The Australians, who began building simple backyard homes for the elderly in the ’70s, call them granny flats. In the United States, these self-contained units have earned another nickname: granny pods...

... the Pages will become the first family in the country to take delivery of a high-tech MEDCottage. The cottage is laid out as an open-plan apartment with a kitchen area (equipped with a microwave, small refrigerator and washer-dryer combo), a bed area and a bathroom large enough in which to maneuver a wheelchair. The utilities and plumbing connect to the primary residence....

... The cameras sweep an area 12 inches above the floor, so normally all they transmit are images of feet and ankles...

... Currently about half of the states allow these accessory dwellings for a family member, according to Mr. Dupin. (Several additional states, including New York, are considering legislation explicitly permitting granny pods.)...

... The cottage costs about $85,000 new; Mr. Dupin’s distributors will buy it back for about $38,000 after 24 months of use...

... For caregivers in the tristate area who like the idea of aging in place, there’s another prefab alternative: P.A.L.S., short for Practical Assisted Living Structures.

... Attaching a portable pod didn’t cost much more than retrofitting his home, and the unit could be set up faster and with less mess. So last year he contacted Henry Racki, P.A.L.S. creator and a Connecticut home builder who also is a certified aging-in-place specialist... 

... Though each P.A.L.S. unit is customized to the client’s needs, the standard 20-by-14-foot bedroom and bathroom unit starts at about $67,000. Homeowners can also lease a unit. A five-year lease runs about $1,700 per month, after which you own the unit.
The pod comes with phone and TV cable lines built into the wall (no wires to trip on), a closet with levers that lower the clothes to wheelchair level, motion detectors that automatically turn the knee-high night-light system on, showers with grab bars and various types of no-step entries, wheelchair-accessible sinks and comfort-height toilets.

So far, Mr. Racki has set up 10 of these mini-homes in Connecticut, Massachusetts and New York. Zoning in Connecticut doesn’t usually allow for full kitchens, Mr. Racki said, but they can be included. He helps clients get all the permits and zoning approvals needed.
None of the P.A.L.S. purchasers so far have requested high-tech medical monitoring. But a system similar to the MEDCottage’s can be added for $16,000...

I didn't realize there was so much innovation in this area. Astonishing that similar devices have been use in Australia since the 1970s. There will be enormous pressure to find a way to care for demented elderly over the next 30 years; systems like this will be made legal in every state.

In my own case, when I'm demented I expect my daughter to build one on the side of a very steep cliff (which is what I personally would want).

For my son however, something like this may be needed for a longer term, presumably as a form of rental unit.

Adult prognosis of autism syndromes - expert anecdotes

I am not aware of any good academic studies on the adult outcomes for children with autism syndromes. The presumed diversity of the underlying injury and recovery mechanisms makes hard research even harder. So the best we can do for now are anecdotes from clinicians with longterm experience ...

Experts Discuss Autism's Long-Term Course - NYTimes.com

Several readers had questions about the range of adult outcomes in autism and how treatments may affect outcomes in individual children....

More and more individuals with autism are now able to function independently as adults. This is a major change over past decades, probably reflecting earlier diagnosis and more effective treatments. There is a very good summary of this in a chapter by Patricia Howlin in the Handbook of Autism (2005, Wiley).

Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors.

For individuals with autism who can go on to college, a number of resources are available on the Yale Child Study Center Web site, including books and links to programs. Options range from small and very supportive programs specific to individuals with autism and related disorders, to traditional colleges and universities. Our book, “A Practical Guide to Autism,” also has a chapter on the topic of adults and discusses college services.

Daily living and adaptive skills, along with organizational skills and abilities, become even more important during the college years. It is important that students and parents realize, though, that changes in the law (the Americans With Disabilities Act now applies to such children) mean that college is not a right, and that those with autism can and do get expelled. Issues relating to sexuality and apparently inappropriate behavior are frequent reasons cited.

Minnesota Life College adding community college features ...

This reminds me of a New Mexico residential training program I blogged on. I found it from a link on the Autism Speaks MN adult services directory ...

Minnesota Life College

... Beginning in the Fall of 2010, Minnesota Life College will add a new component to our program curriculum. In partnership with Minneapolis and Community Technical College (MCTC), we will provide our students the opportunity to experience a traditional Community College or Vocational Technical program, through a specifically designed curriculum that includes the ACCUPLACER test, study strategies, organization of work and time, tutoring and a 2 credit ‘Strategies for College Success’ course at MCTC. This component is designed for the MLC student that wants to see if a Community College or Vocational Technical program is the next ‘right’ step for them during or after MLC...

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.

Adapting to fewer resources for special needs children and adults

The future is looking kind of gloomy for most Americans ...

Care of special needs adults in post-employment America

... the Great Recession grinds on. The percent of employed adult Americans (employment-population ratio) is now back to where it was in 1976, when most women weren't in the workforce. The annual incomes of the bottom 90% of US families has been flat since 1973...

Some Americans are astoundingly wealthy, but most of us are not. The direct and indirect costs of care of a disabled child, or adult, means special needs families were stressed even when American social supports were relatively robust. Now things are getting harder ...

... Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

... Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin...

... Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”...

We are now seeing long group waiting lists in Minnesota, yet we aren't yet seeing the direct cash transfers to families that are reported in Connecticut, Arizona, Vermont and New Hamphsire. In place of group homes we now have "housing access services" -- suited for persons who can live independently.

We're going to have to figure out how to adapt to this. I have ideas, but I need more people ...