Does it make sense to close state developmental disabilities institutions?

Op/Ed Column by Gary Blumenthal, President & CEO of ADDP (2011)

Yes, it does.  Closing state institutions and expanding community programs is best practice recommended by 30 years of practice and endorsement by disabilities professionals and embraced by the rest of the nation; and as the result of litigation by disabilities advocates motivated by a lack of options and services for people living in the community and civil rights advocates disturbed by patterns of past abuse & neglect in institutions across the country.

Massachusetts stands out as one of only a handful of states that has resisted closing excess state institutions.  In fact there are only seven state institutions in all of New England, six of which are in Massachusetts.

As Massachusetts legislators are struggling to put together the FY 11 budget, they are once again facing the perennial discussion regarding the State's plan to close four of the state's six state institutions for people with developmental disabilities.

In December 2008, Governor Deval Patrick accepted a recommendation from EOHHS Secretary JudyAnn Bigby and DDS Commissioner Elin Howe  to reduce the state's operation from six to two institutions, noting that the system, which once housed over 10,000 people with developmental disabilities had dwindled to serving less than 900 people, while the community system had grown to serving more than 30,000 people in both the private provider system and state operated programs.

The recommendation to close state institutions has been one supported by the developmental disabilities professional community, national family advocacy organizations, such as the Arc of the U.S. and UCPA-US,  and notably the National Conference of State Legislatures (NCSL).  In fact, for several years NCSL has recommended de-institutionalization and closure to its members.

I know this from personal experience as a former Member of the Kansas House of Representatives for 11 years, as the former chairperson of the NCSL Task Force on Developmental Disabilities and as the executive director of the President's Committee on Mental Retardation for President Bill Clinton.

Reasons for closure include support for community integration, the high cost of maintaining a dual (both community and state institutional) system, and the documented studies that validate that equal or better care is available in community settings; as well as the desire to provide people with developmental disabilities with the right to live in community settings.

NCSL, in a landmark analysis, concluded that the overall cost of community care is substantially higher in state institutions, while serving essentially the same people as community programs.  NCSL further noted that state institutional operating costs will continue to increase as the census of such programs continue to dwindle (NCSL:Deinstitutionalization of Persons with Developmental Disabilities:A Technical Assistance Report for Legislators by DeWayne Davis, Wendy Fox-Grage, and Shelly Gehshan).

Despite these strong factors supporting complete closure of state institutional programs, the DDS Closure Plan chose a moderate plan that did not close all of its state institutions.  Instead, DDS opted to provide families preferring institutions with a guarantee of one, and perhaps two permanent state institutions.

The DDS Plan is focused on aligning facility capacity to better reflect a system focused on current capacity which is around 798 individuals, rather than a former system which owns sufficient land, resources and buildings reflective of its former 10,000 person capacity.

The DDS plan, which is expected to close Fernald Developmental Center in 2010, does not expand the private provider system.

Instead the State is consolidating its operations into two remaining institutions and  expanding its state operated community program as an alternative choice for residents and their families.

Expanding the state operated programs was an accommodation sought by some families who wanted a choice between state operated & POS programs;  and state employee unions seeking to transfer member jobs from closed state institutions into the succeeding state operated community program.  

Under the DDS plan, very few families have moved into the POS private provider system, instead focusing on the State's expanding state operated and state owned system. ADDP believes the more appropriate expansion should have been the community private provider system which provides in Massachusetts and in other states, a more cost effective, efficient and inclusive opportunity for people with disabilities and their families.

Observers monitoring the DDS budget have noted the incongruity of DDS having to cut community services to hundreds of consumers, while maintaining a 10,000 person capacity campus system that serves less than 800 people.

For the last three budget cycles, the State has endured a precipitous drop in state revenue resulting in the Commonwealth jettisoning many essential elements of the State's social services safety net.  Thus, legislators seeking to keep expensive, excess state institutional capacity seem to out of touch with the Commonwealth's economic troubles.

Advocates ask how can the Commonwealth shred every other element of the state safety net and all other state programs, while a few legislators work aggressively to keep whole an obsolete service model that drains millions of dollars to maintain six campus settings, including dozens of empty buildings that are still draining funds from other individuals needing DDS services and supports?

Why are some people trying to stop closure?

There appear to be a variety of motivations for those opposing closure including some family members who are comfortable with existing state institutions and see no reason to change a system that has operated for their family for several years.

Some of these families are afraid that community programs may not offer the same level of quality, while some simply only know the institutional provider option, and are unfamiliar with community service opportunities.

Study after study, after study, conducted by professionals including the American Association on Intellectual and Developmental Disabilities (AAIDD), and others, have verified outstanding quality in community settings, and many studies indicate high levels of satisfaction by families and consumers who have moved from institution to community based systems.

Other reasons for opposition tend to be both economic and political.

Throughout the nation, closure of state institutions have frequently been hampered by state employee labor unions, capitalizing on the fear of families.  In fact, some unions have sought to equate system change with job losses. Some have tried to equate job security as equal to consumer interests. Such opposition has often been described by advocates as disheartening and cynical moves by labor unions placing a higher premium on its members jobs than on the individual receiving service.  Not all state employee unions have taken this position.  SEIU 509 has been a noteworthy exception to this tactic.  Other states have mitigated this concern with programs allowing displaced state employees the opportunity to obtain other state jobs; or by expanding state operated community programs and then transferring state employees into union member jobs on the state payroll, though not on a large and costly campus.

ADDP recommended to the State the expansion of the private provider community system, however DDS chose to expand its state operated and state owned group home system.  ADDP continues to believe that the most successful, efficient and inclusive system is the private provider system.  In fact, ADDP has established a Closure Committee which is seeking to provide support to families and consumers who wish to choose a private provider option rather than transfer to the remaining state institutions or a state owned and operated community group home.

Additional opposition to institutional closure  can be strictly parochial including opposition from local legislators who represent communities with limited employment opportunities, thus the closure of the state institution may feel like a major economic drag.  Regardless, holding people with disabilities hostage to local economic concerns is viewed by advocates as inappropriate treatment of people with disabilities.

Some well meaning legislators believe that institutions are the only venue available to serve highly medically fragile or behaviorally challenged individuals; however the data simply doesn't support this belief.  In fact, there are dozens upon dozens of community programs that support individuals with medical and behavioral needs just as challenging as those residing in state institutions.

Legislators who would like to see specific programs that provide support to medically fragile or behaviorally challenged individuals should feel free to contact the ADDP office and a tour can be arranged.

Again, as a former State Legislator, I understand the concerns of legislators who wish to be responsive to their constituents; and who believe they are advocating on behalf of the best interests of people with disabilities.

Furthermore, legislators who try to prevent closure due to perceived economic impact, or potential job losses,  may actually be doing their constituents a major disservice, causing taxpayers greater costs in the long run, subjecting families to continual uncertainty and delaying inevitable contraction of a system that is increasing in expense while decreasing in census.  And legislators who suggest that the State can continue to afford a 10,000 person campus for a census of 798 (and dwindling) may be out of touch with the economic realities of the Commonwealth in 2010.

What did the Massachusetts House do regarding closure?

The  Massachusetts House adopted Amendment 116  which prevents DDS from conducting any further work on institutional closure.  The amendment directs DDS to  "take no action to reduce the client population of any state residential-based facility for the mentally retarded, including intensive individual supports, for the purpose of closing said state institutions, and no steps shall be taken to close said institutions through attrition, layoffs or any other means until a study of any such reduction or closing shall be completed..."  The report must be completed no later than December 1, 2011.

The effect of this amendment is costly to the Commonwealth and is unfunded by the House.

Immediate costs would include an additional infusion of $13 million to make up for lost savings and continued operation of Fernald Developmental Center.  And there are even greater costs, noting that DDS has already begun the building and expansion of state operated group homes that will be funded but empty if DDS is forced to abide by this amendment.

While on the surface the amendment seems to be asking for just one more study, it is important to note that the Department has been asked on numerous times to make such reports and has complied with each request coming to the same conclusion each time.

In the meantime, the Senate now faces an FY 11 budget which, unless amended will cause up to 195 people with developmental disabilities to lose their residential services (including private and state operated programs; and 225 people to lose their day & employment services.  The average age of these individuals exceeds 40 years.  Shuttering their group homes, and day activities will mean returning them to their 60, 70, 80 and 90 year old parents.  Surely that is not an option in line with the compassion of the people of the Commonwealth.

Is there any problem in having both state institutions and community programs?

NCSL addresses this concern in it's landmark report, (NCSL:Deinstitutionalization of Persons with Developmental Disabilities:A Technical Assistance Report for Legislators by DeWayne Davis, Wendy Fox-Grage, and Shelly Gehshan).The Report warns legislators that states can ill afford a dual track system.

NCSL notes: " 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 programs of community services will decline."

This pattern is one factor in the tremendous tension that exists between those who disapprove of keeping six state institutions for 700 people remaining in them, and those in the community who see people being denied service, cut from existing programs and having to fight every session for the limited dollars for a maintenance budget, while hundreds go without services.

In this time of economic uncertainty can we afford to continue to fund an oversized and increasingly obsolete service model?  Is it fair to take services away from hundreds of  people currently receiving services in community programs while supporting an institutional  and cost inefficient campus system built for 10,000?