After almost two years in office, the Patrick administration has issued a major policy statement on long term care. The 32-page "Olmstead Plan" roughs in a "Community First" agenda for elderly people and all disability groups.
What's good: It's a big step to have any kind of stated plan, and an impressive one to make a sweeping vision across disability groups which have had seperate budgets and bureaucrats in the past. The legislature has actually appropriated $20 million for this, so some people may get out of nursing homes and back into their own homes with supports, which everyone agrees is a great goal. $5 million of that is earmarked for the Rolland Settlement, which would move people with mental retardation/developmental disabilities out of nursing homes and back into active treatment, mostly a fine goal despite the careless settlement agreement of this year which includes in people like the Groton 43 who actually need the high level of medical support of a pediatric nursing home.
Another good thing is that the plan views the issue as "Long Term Care." Despite the equal billing for "Community First Olmstead Plan" -- the actual title -- this is a move away from the civil-rights and individual-rights rhetoric that has whittled away at the long-term side of the continuum of care since the 1970s. Individual rights are terrific, until the right to refuse treatment lands hundreds of thousands of mentally disabled people in prisons and homeless shelters across the US. More good points: actual timetables for some changes. Workforce development piece. Suicide prevention. Personal care attendants. Affordable housing. Transportation. Employment. And some specifics. A lot of real thinking and planning went into this paper.
What's bad: As I've commented on the politics blog, Blue Mass Group, there were no family members as such on the advisory group. Yet families are deeply involved with long term of every kind, or should be, and deeply affected by the services available when a member needs long-term care. The more individualized (and decentralized and privatized) a system of care becomes, the more family members become the only real case managers; Social service planners have always thought they were more expert than family members; but the price of this mistake gets higher and higher.
What's specifically bad for people with MR/DD: "shifting focus of long-term care financing from institutions to the community" and "The current federal long-term care financing system tends to favor institutional over community care." Both these phrases go well beyond the Supreme Court's Olmstead v. L.C. decision, which affirmed the rights of two people who could be treated in a community setting to get that treatment. The plurality and concurring opinions in that case also state that not everyone should be forced out of secure treatment. Nearly 20 years after the decision, the bias has shifted away from expensive long-term care, indeed from state-operated care of any kind. Even for people who need the safety and concentration of services provided in today's much-reformed developmental centers and state-operated nursing homes. It's hard for any Governor who has cut the budgets for the severely and profoudly retarded citizens served directly by DMR, to the very edge of federal-mandated staffing ratios, to call that a "Olmstead Plan."
Revealing errors: "Mass. is in the highest quartile of states for the number of nursing home beds per population." This is supposed to be a argument for kicking, uh coaxing, people out of those beds. But what if Massachusetts was in the top quartile for percentage of elderly people (It's pretty close, about 14th)? Then we would be in the mainstream. What if Massachusetts were a state with a high per capita income where people can afford nursing home beds better than other states? It is. What if Massachusetts were a state where the elderly population was somewhat sicker than in other states, and needed those nursing home beds? This statistic isn't available to the public, but could be estimated by DPH. That this unsupported argument is used shows part of the political agenda of the Governor's staff -- to cut costs at the expense of the elderly and disabled.
Completion date for "Long-term Care Options Counseling" (12/31/08). Completion date for expansion of respite capacity (7/1/09). First we talk people into leaving their secure treatment; six months later we put up the safety net. State budget goes flooey in the meantime? Too bad.
"Establish Long-term Care Financing Advisory Group. (Completion Date: 9/30/08)" Less than a week to go, financial wizards phones are all busy. Hope they aren't calling Governor Patrick to warn him about not spending the $20 million.
"Recommend strategies regarding the Chapter 688 (“Turning 22”) process, including recommendations on information dissemination to families about community-based options. (Completion Date: 12/31/08)" Better start by telling the governor's Department of Administration and Finance to stop cutting that budget line every year the population goes up. Families whose disabled child at home suddenly has no school and no supports will not have time to read the information about community-based options.
So what do you think? Let's get the voice of family members on this plan even if the governor didn't!