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 RFPWhen 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.
