We're not at all sure that statement is true.
There's no question that there has been a tide of political and financial pressure around the country in the past decade to close state Intermediate Care Facilities for the mentally retarded (ICFs/MR) and privatize their services.
But it is simply not the case, as the Patrick administration tries to imply, that Massachusetts is unusual or lagging behind the times in continuing to maintain state ICFs/MR. ICFs/MR still operate in 41 states, which is the vast majority of the states in the union. And the families and guardians of residents of facilities across the country have been fighting to keep them open.
There has been good news for these facilities in some states such as Delaware, which opened a new ICF/MR this year, and Nebraska, in which the governor and the County Board of Supervisors have voiced support for an embattled facility.
If there is a trend, it is the trend among private provider companies and politicians in many states, including Massachusetts, to work together to shut facilities down. We think that one of the more insidious purveyors of this “trend” are protection and advocacy organizations, such as the Disability Law Centers, which are using federal and state funds to further their de-insitutionalization agenda.
The National Voice of the Retarded, Inc. lists 28 lawsuits filed by protection and advoacy organizations in 19 states to close institutions. Many of these cases are class-actions suits. The irony is that most of the families and guardians are involuntarily represented in these suits. They cannot opt out of them even if they want to.
In the name of their civil rights, facility residents are being evicted from their long-time homes under these lawsuits. Just consider the shameful treatment of the residents of the Seven Hills Pediatric Center in Groton, MA, which the Patrick administration is closing against the wishes of the families and guardians there. These people are prisoner “plaintiffs” in a lawsuit that is forcing them out of this critically important institution for residents with profound brain damage.
U.S. Rep. Barney Frank has proposed legislation which would give individuals and guardians the right to opt out of these lawsuits.
This COFAR Voice newsletter describes how the ICFs/MR in Massachusetts are fully integrated with their surrounding communities and offer centralized clinical, medical, and therapeutic programs that benefit both the facility residents and community-based clients. Yet, to further their closure agenda, the providers and their allies around the country continue to resort to the untruths that the facilities are “outmoded,” “archaic,” and “segregated.”
In Massachusetts, the Patrick administration has recruited Elin Howe, who presided in the early 1990s over the shutdown of institutions in New York, to do the same thing in this state. However, the Massachusetts Legislature's budget conference committee is currently considering a House amendment that would require a comprehensive cost analysis before Fernald and three other state facilities could be closed here. We strongly urge the conference committee to support the House amendment.
Commissioner Howe has been lobbying legislators during the past two weeks, claiming that keeping the facilities open in Massachusetts is too expensive. Yet, Howe opposes the cost-benefit analysis in the House amendment. We must simply follow the closure trend, she maintains.
We have seen many trends come and go in this country, and not all of them have been worth following. A few other recent trends have included the deregulation of the banking and airline industries, privatization of public utilities, and the reduction of government oversight of food safety. All of these trends have been fraught with problems. De-institutionalization of the mentally ill and mentally retarded has similarly had a highly problematic history in the U.S.
In the end, this comes down to money. The feel-good rhetoric of the closure advocates that the facility residents will finally achieve “integration” and “dignity” and “equal or better care” in the community-based system cannot hide the fact that the private provider organizations are waiting eagerly for the dollars that will follow the former facility residents when they are relocated. Yet, the care simply will not be equal or better in an under-funded community-based system in which staff are paid less than in the facility system and have higher turnover and less oversight.
Like many other trends, the facility closure trend is one which needs to be examined closely and not followed blindly.
If it was really important to go with the trends, why don’t we reqire everyone with disability to get tatooed or pierced? But in fact, the Commissioner is not right about the congregate living situations she calls “institutions” –typically defined as facilities for 16 or more persons — or for ICFs/MR. In fact, many of the states she cites as having no facilities do have ICFs/MR which meet the federal requirements for staff ratio, medical services, and active treatment. States have ICFs as small as four-persons. There are private ICFs. Maine, which is supposed to be an example of a state with no facilities, has almost 7 times as much ICF/MR utilization per 100,000 population as Massachusetts. Their FY2006 spending for private ICFs with 15 or fewer people was larger than what the much-bigger and wealthier state of Massachusetts will budget for the six developmental centers in FY2110.
<
p>Dave has been at this longer than I, and he may know why Massachusetts has stopped funding smaller ICFs, and may never have funded private ones. But if the trend against large institutions were the important one, DDS could reconfigure the present institutions as villages of small ICFs and probably most of the residents and their families would accept this. The safety of the 24-hour nursing availability, and thw ons-site medical and therapeutic resources required for an ICF are the real sticking points for many families. The Fernald postage-stamp plan could be done in this way. For some reason Massachusetts’ DDS is aiming not to follow the trend, but to invent a new trend away from a system of care with any option for comprehensve treatment — combining active treatment with major medical supports onsite.
<
p>As one former director of Fernald says in the PBS film, “Front Wards, Back Wards,” senior citizens can live in congregate facilities and enjoy assisted living; why can’t we extend the same choice to old people with mental retardation?
Moe:
<
p>Thanks for the information on Maine. I was not aware of those facts. Maine is continually cited as one of the New England states that has no ICF/MR facilities. I believe the Commissioner states that only 6 in Mass and 1 in Connecticut currently exist.
<
p>Again, more misinformation.
It is good news that two states are opening/supporting ICRF/MRs. Its “the best kept secret” in town. 82% of states have these facilities. Too bad its not more highly publicized. I must have missed the downward trend.
<
p>Unfortunately it is all about the money. The “feel good rhetoric” is transparent and quite tiresome.
<
p>Not comprehending the dollars involved, I did a little research on the Internet (Mass.gov website). It didn’t take me too long to gain just a slight understanding. It was an eyeopener.
<
p>Example: One non-profit private provider had gross receipts of $82+ million. $81.5+ million was from government sources.
<
p>Example: Another non-profit provider had gross receipts of $42.5 million. $41.5 million was from government sources.
<
p>Each provider had numerous non-profit affiliates. Their buildings/residenses had build/construction financing from government sources. Many of the government financing arrangements had “no interest-no payback” provisions. Much was government grant money. The providers were guaranteed the section 8 rent subsidies from these essentially FREE building. They each had non-profit affiliates to provide services (staffing, coordination of services, habilitation and employment providers, insurance/medicaid filings) to the residents of these building. They had highly compensated (6 figure) executives. Just 2 = $123 million. How many private providers are there? I don’t think I can do the math.
<
p>I learned that an ARC (Association for Retarded Citizens) is not always an ARC when it acts as a provider. One ARC had gross receipts of $70 million. $69.7 million was from government sources. It also had a host of similar affiliates. It also had highly compensated executive. I ask you–advocate or provider. I should state that not all the ARCs I reviewed had these numbers. The national ARC (ARC US) had receipts of $4 million.
<
p>My point–ultimately the government/taxpayer (state and federal) is paying the bill no matter where our developmentally disabled reside. What differences does it make which pool of money it comes from–its all the taxpayer’s pool. The cost of care is not less simply because you move a person from Point A to Point B. Its just shuffeling the numbers or moving air in a bag. The funding follows the individual and the private providers are anxious to get those funds. In this case, it costs money to move people to Point B because all the Bs don’t exist. But I now have no doubt there are providers waiting for free government financing to build the point Bs.
<
p>As a taxpayer, since I am paying part of the bill, I want the money spent providing the best setting for the individual, as determined by the only person that has no other agenda than the best interest of the individual–the guardian. Not a paid advocate, private provider, bureaucrat, or a politician. Nor do I think that an imaginary national trend should be the deciding factor in what is the best living arrangement for an individual. These are people–not checkers.
<
p>Fiscal responsibility DEMANDS that a “true” cost-benefit analysis be accomplished. Given the complexities, a report prepared in 90 days, as suggested by the Senates budget amendment, would be cursory at best. Can the data be obtained from all the various agencies in 90 days? The House budget amendment provides a two year period to accomplish this analysis. This would at least have a more realistic timeframe for gathering the data and completing the analysis.
<
p>The results of that analysis (the facts) should decide what direction is taken regarding the care of our developmentally disabled citizens…not some “mythical national trend.”
<
p>Why is the administration and Commissioner so dead set against this analysis? Why force this policy, (I forgot it was a non-monetarily driven policy) regardless of the human and monetary costs, before knowing all the facts?
<
p>
The “Trend” to close ICF/MR’s is most definitely money driven! Thanks ssurrette for the eye opening of what is driving this “Trend”!!!! Greed, nothing but “Greed”!!
mam