As a matter of disclosure, I work for one of the original plaintiff’s (MARC v Dukakis) that were consolidated into the Ricci case.
The Arc of Massachusetts (our current moniker) does not have any fiscal obligations to the state, although we are often portrayed by our critics as either beholden to state agencies and/or the vendors who rely upon state contracts. One reason we have been so effective over our fifty year history is that since we do not carry any baggage, we are free to work on behalf of our constituency without fear of reprisals – often times at great discomfort to the Commonwealth and the Feds in court, or through statutory and regulatory proposals that many in state govt. and the vendor community would politely characterize as a nuisance.
As anyone following the Fernald story realizes, this is a tremendously complicated issue, but the stakes are high for anyone in Massachusetts who pays taxes and/or cares about the needs of people with disabilities. If anyone needs a recap, I have compiled a summary from the early 1970’s to date, that probably leaves out too much detail, but for those unfamiliar with the story of how we got to this place, you may be interested to read it. If not, scroll down to the questions and answers section were you can read my editorial commentary on the present, and possible future of the Fernald saga.
I did want to address one specific point that has been asked repeatedly and which is a common sense question – who stands to profit? I feel some of the public officials who have portrayed themselves as champions of the Fernald residents have been disingenuous about their image in this regard. I comment and name names in an editorial that was published in the March 27, 2007 Waltham Tribune.
With an annual budget of $1.2 billion, the Massachusetts Department of Mental Retardation (DMR) is the largest agency within the Executive Office of Health and Human Services. $182,759,388 of the DMR budget is spent on operational expenses for the six developmental centers that serve approximately 3.4% of the total DMR-eligible population of approximately 32,000 adults. To see how these dollars are distributed, view the spreadsheet on the following page. (all accounts are now final for FY08).
Since 1977, over 85% of the population of the six large institutional facilities overseen by DMR housing people with mental retardation (the currently-accepted term is people with intellectual disabilities) have moved into community-based settings. Admissions have been closed since that time. Roughly 1,100 remain in the six institutions, with all the buildings, land and many support staff needed for the existing large physical plants. Other facilities known as State Hospitals (such as Westboro State Hospital) are operated by the Massachusetts Department of Mental Health (DMH) and are not part of the current debate surrounding the DMR institutions.
In 2001, Governor Mitt Romney directed DMR to begin a process of consolidating the state schools, beginning with the closure of Fernald. In response, some of the family members who are legal guardians of Fernald residents petitioned US Judge Joseph Tauro to reopen the Ricci v Okin case, arguing DMR had violated the rights of the 43 residents who had transferred out of Fernald since 2003.
On February 9, 2006, Tauro appointed US Attorney Michael J. Sullivan to investigate these claims. On August 14, 2007, After a review of Sullivan's report, Tauro issued an order on the original motion. Tauro said that DMR must continue to offer Fernald as an “option” to current residents. Taken literally – if the decision stands, the closure of Fernald, along with all of its resources, will drag on, potentially until the last resident/or guardian refusing to move into the community OR transfer, is deceased. If the decision stands, it will set precedent and the same process will inevitably occur for each of the other 5 remaining institutions. For more detailed analysis, including links where you may download a copy of both Judge Tauro's order and memorandum, go to the following link on our webpage.
Governor Patrick has until September 14, 2007, to appeal Judge Tauro's order.
For those completely unaware of the record of the horrendous conditions within institutions that led to significant changes nationally, you may find it helpful to first view material at the following link where I chose two case studies to demonstrate some of the history (check out a very young rookie reporter named Geraldo Rivera).
I have presented the issue in a question and answer format:
1. What are the benefits to people served by the Massachusetts Department of Mental Retardation and the general community to closing Fernald?
While state school admissions have been closed and populations have dec
lined at institutions in Massachusetts, the need for community services has grown. The state can no longer afford both a growing community service system and the capital costs associated with maintaining aging institutions that serve a decreasing number of individuals. Major capital expenditures for deferred maintenance and required upgrades can be avoided, if all six facilities are closed.
Both Congress and the U.S. Supreme Court have made strong statements to establish integrated, least-restrictive services as a legal right (Civil Rights Act, 1965; Home and Community Based Medicaid Waiver, 1981; Americans with Disabilities Act (ADA), 1990; and the U.S. Supreme Court’s Olmstead Decision, 1999). Yet overly-restrictive services persist. “Society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem” (ADA preamble).
Despite some progress, Massachusetts continues to lag in its implementation of these federal and state directives and continues operating six institutions, while nine states/territories have eliminated them (Alaska, District of Columbia, Hawaii, Maine, New Hampshire, New Mexico, Rhode Island, Vermont and Wisconsin). Two other states (Minnesota and Oregon) have less than 50 individuals residing in institutions.
Massachusetts is unique among New England states in its maintenance of six large institutions. Although admissions are closed, almost $200 million is allocated to fund state institutions on an annual basis for operations. In addition to providing new community-based services to the less than 1,100 individuals remaining at the state schools, funds could be reallocated to enhance existing services. The Commonwealth has made minimal progress towards institutional closure and reinvestment in the community. In fact, thus far, Governor Patrick has actually cut funds for many community-based housing programs that benefit people with disabilities.
The question has often boiled down to one of choice, as families claim the right to choose services for their loved ones. Consider the following dynamics, if the Commonwealth continues to fund individuals at Fernald:
The average per-head cost of serving people at Fernald is open to some debate. Understandably, state officials have hedged on identifying a definitive number, as such information could be cited in a future court action. Using a recent neutral source, The Boston Globe reported on March 8, 2007, that there are 180 residents at Fernald with a budget of $60 million which equals an average cost of $333,333/person/year plus the cost of renovations. The annual Fernald budget does not include the amortization cost of past renovations or the cost of health insurance or retirement for the state employees at Fernald. This might bring the total per capita cost close to $400,000/person/year.
In his FY2008 House 1 Budget, Governor Patrick proposed spending $5.5 million for the “Turning-22” DMR account to serve approximately 600 young adults aging out of public school systems (with their legally-mandated right to special education services) and entering the adult service system. This would provide an average cost of $9,167/person/year. Many of these people have profound needs, at least as significant as those typically cited at Fernald. According to (former) DMR Commissioner Gerry Morrissey, a local school system was funding one such individual who entered the adult DMR system at $500,000/year. We must assume this person’s needs will not lessen after turning 22, but the fiscal constraints of the adult system will likely force a considerable reduction in the amount of funding the person will receive from DMR. During the budget process, the Legislature added funds so the final FY08 T-22 account is $7.7 million, still a REDUCTION by $800,000 from last year's amount.
While my organization was an original plaintiff and continues to represent many of the existing 3,959 Ricci class members (the majority who now, ironically, reside in the community), we also advocate for many other individuals who are not protected class members. As advocates for a broader constituency, we argue the fiscal dynamic, as presented above, does not seem a fair “choice” to the 600 young adults turning 22.
2. What obstacles do we face in efforts to close Fernald?
Several barriers have precluded Massachusetts from expending the fiscal and political capital needed to successfully transform its delivery systems. First, there are major disincentives to move people into community-based settings when we have inadequate budgets to cover community care. In the preliminary stages of reducing state school population and developing community-based treatment options, research shows that states have to operate dual systems of care that may require higher appropriations. Dual funding is the result of state officials reluctance to scale down institutional staffing and the institutional population in the face of intense political pressure exerted by families of some state school residents and by labor unions representing workers employed at the institutions.
In the case of Fernald, two of the three unions representing the institutional workers have fought alongside families in an effort to stop closure and consolidation. The unions opposed to closure are the Massachusetts Nurses Association (MNA), and the American Federation of State, County and Municipal Employees (AFSCME). Representatives of the Service Employees International Union (SEIU) Local 509, that represents a small percentage of DMR employees working in institutions, have stated they do not oppose closure or consolidation.
This is not just a Massachusetts phenomenon. At the federal level, these interests have opposed federal legislation introduced by U.S. Senators Tom Harkin (D-IA) and Gordon Smith (R-OR), called The Money Follows the Person Act, an effort to put into bill form
language from President George W. Bush’s budget proposal(s) that would encourage states to allow Medicaid funds to “follow the person” as they move from nursing homes or other institutions into community based services.
According to a 2002 Technical Assistance Report for state legislators, published by the National Conference of State Legislatures, maintaining a dual systems of care (institutions and community-based services) is not sustainable. “Costs could be minimized when appropriate cutbacks in facility operations are made, followed by the fairly rapid closure of an institution. States that operate dual systems of care maintain funding for an institutional care system while simultaneously supporting community living. As long as states continue to operate large public facilities, state funds will be used to support those facilities, per capita costs of operating facilities will continue to increase and expansion of community services will remain stagnant or decline in the face of inflation. Massachusetts, Illinois and Texas operate dual systems.”
3. What options do current residents at the facility face if they are forced to leave Fernald?
In addition to rights afforded them under the Americans with Disabilities Act and the U.S. Supreme Court’s Olmstead decision, residents leaving Fernald enjoy significant lifetime protections afforded them as protected consent decree class members, the same protections afforded others who have moved into the community since the 1993 court-order was issued (with a few exceptions, adult DMR clients who are NOT consent decree class members are not entitled to services and are essentially held hostage to the annual state budget, competing with hundreds of other interests lobbying our elected and appointed officials for annual appropriations.
It is important to recognize that in his recent report provided to the court at the behest of Judge Tauro, US Attorney Michael Sullivan found no basis for the contention that the rights of 43 individuals who had left the facility in recent years had been violated as per terms of the consent decrees.
4. Given the recommendations by Attorney Sullivan, what do feel the next step will be?
We are hopeful Governor Patrick will appeal Judge Tauro’s order. It is time to complete the transition from isolated, hidden and “separate-but-equal” services to fully funded community inclusion. Other states have found ways to close more than 174 institutions or institutional units since 1960. Several states operate entirely without state-operated institutions for persons with disabilities. Clearly, cost, service quality, and lack of available successful community alternatives are not the reasons these institutions remain open. Instead, institutions for persons with disabilities remain open because some states lack the political will to close or downsize them.
Most states provide community supports to most or all of their citizens with disabilities. Most states have made policy decisions that acknowledge the substantially better quality of life and quality of care in community settings, and which support the right articulated in (irony of ironies) President George W. Bush’s New Freedom Initiative for individuals to be free of unnecessarily restrictive living arrangements.
For those who simply can't get enough of this stuff, Google some of the other organizations listed to get a sense of other's perspectives, or go to our main Fernald resource page where we have detailed information and links to keep you occupied for at least a couple of weeks
DISCLAIMER: Although many of the editorial positions outlined above reflect some of those of my employer, The Arc, the opinions in this posting are my own and are meant only to (hopefully) spur discussion and raise the interest of members within this forum about this issue.