The Least Among Us

Budgets, whether state or national, are moral documents that reveal our priorities.

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More than ever, the Massachusetts Budget represents legislators who are unwilling to make unpopular decisions, stand up to powerful unions, address pension abuse and eliminate hacks.

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Instead, they have scrapped programs that affect the "least among us," the disabled.

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The Arc offered the following --
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More than $200 million of devastating cuts pending in Senate Ask your Senator to co-sponsor disability amendments
More than 23,000 adults and children with disabilities and their families are slated to LOSE crucial services. These cuts will be devastating (see below).

Please use our Action Center to ask your Senator to co-sponsor and support these vital amendments. Please personalize the email to your Senator and if you can, follow up with a phone call to reinforce.

IF THE LATEST BUDGET GOES THROUGH, THIS IS WHAT TO EXPECT:
8,000 getting Day Habilitation services... CUT
2,600 adults getting Day/Employment services... CUT
11,000 families getting Family Support and Respite services... CUT
500 people getting essential transportation services... CUT
Thousands of adults getting Dental Health services... CUT
624 students graduating from school and needing Turning 22 services... CUT
And this is only a partial list.

All told, there will be a $243 million shortfall, leaving thousands of individuals and families stranded with nobody to help them, no place to go during the day, and nowhere to turn for a safety net.

The Arc

The Arc of Massachusetts issued the following announcement --
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FOR IMMEDIATE RELEASE – DECEMBER 12, 2008

THE ARC CELEBRATES GOVERNOR’S PLAN TO CLOSE FOUR STATE INSTITUTIONS
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Waltham – Governor Patrick’s historic announcement today to close four of Massachusetts’ six institutions (Fernald, Glavin, Monson and Templeton) over the next four years is a clear victory for those with intellectual and developmental disabilities in the Commonwealth, and those who care and advocate for them.
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The administration’s plan features the transition of hundreds of individuals from institutional settings to integrated community living options. Despite sharp national trends toward community-based options, 900 individuals statewide remain in institutions.
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“Our state can provide services and supports for the widest range of individuals with disabilities,” said Leo V. Sarkissian, Executive Director of The Arc of Massachusetts, “and these services can and should be provided in people’s homes, not in institutions. Nobody should be excluded.”
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Six of the seven institutions remaining in New England are in Massachusetts despite the fact that people in community settings have a better quality of life at far less cost.
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“We appreciate the tremendous commitment that Gov. Patrick and Secretary of Health and Human Services JudyAnn Bigby have shown to serving people in their communities, where they are best served,” said Fred Misilo, President of The Arc of Massachusetts. “The truth is that the closure of these institutions is long overdue.”
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Those living in Massachusetts’ institutions today have similar characteristics (age, level of disability, health issues) as those who have been leaving Massachusetts facilities for decades. Past facility closures in Massachusetts (Belchertown State School, 1992; Dever Developmental Center, 2002) have seen over 95% of residents transition to community settings.
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The average cost of serving an individual in an institution is nearly double the cost serving them in the community ($570/day to $293/day) The Department of Developmental Services (formerly Department of Mental Retardation) serves more than 33,000. A full 15 percent ($187.5 million) of that $1.2 billion budget goes to serving the 2.7 percent who live in institutions.
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According to Sarkissian, the closure plan will allow for better use of those limited state resources. “For the thousands of people on waiting lists for family support, respite, residential and other services, this decision is a godsend,” Sarkissian said. “At least now, the inadequate funds that are available can go where it does the best good, in the community.”
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Sarkissian noted that some families with loved ones at institutions may be anxious about moving. “We certainly recognize that some families feel their son or daughter’s current living situation is best, but we are optimistic that the transitions can be positive for everyone involved,” Sarkissian said. “Our network includes many families who have gone through similar experiences, and these families we will be available as support.”

More information:
· Fact Sheet: Dispelling the Myths about Massachusetts Institutions
· Arc analysis of October 2008 federal Fernald Ruling (includes link to Judge Sandra Lynch’s ruling)

The mission of The Arc of Massachusetts is to enhance the lives of individuals with intellectual and developmental disabilities and their families. We accomplish this through advocacy of supports and services based in the community. Through advocacy and collaboration with others, The Arc of Massachusetts has helped to establish and maintain significant legislation and funding on both the state and federal levels.
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This is a significant commitment by Gov. Patrick's Administration and they deserve praise for their accomplishments.

Ignoring God's children

The following was sent by The Arc --

It is startling to see your life depicted on a television show, especially when that show is a top-rated crime drama. This week's episode of Law & Order, titled "Challenged," showcased the challenges facing millions of American families, including mine.

The plot revolved around Pete, a 47-year-old man with intellectual disabilities who had been sent to a state institution by his parents when he was only 3. Willowbrook, the real-life New York institution closed in 1987, was described as a "hell hole." Now living in a community home, Pete today enjoyed his unique group of friends, diverse caregivers and the respect of his employer.

This episode's moral dilemma questioned parents who willingly place a child with disabilities in a state institution. It bitterly, and quite accurately, described the immeasurable stress that disabilities bring to a family and the lack of support they receive.

The writers, however, made one mistake. Several times the dialogue referenced, "that's how things were done then," suggesting times have changed. For many families, things have hardly changed at all.

As the parents of 8-year-old identical twins with severe developmental disabilities, my wife and I have come face to face with this moral dilemma. Our pediatrician recently told us that we should "prepare to place them somewhere" in the next couple of years. In other words, he recommended we institutionalize our children.

This happened in 2008, not 1964. While many parents make this difficult decision, it does not come easy. As reported in The Dallas Morning News, all 11 Texas "state schools" for people with developmental disabilities are currently under investigation by the Department of Justice for alleged abuse.

Most families want to stay together. However, as shown on Law & Order, the physical, emotional and financial strain on a family without support can be insurmountable. Community-based services cost less than institutionalization, but Texas forces people with disabilities to endure waiting lists for nearly a decade before receiving help. Not surprisingly, for families who can no longer go it alone, there is no waiting required to place their child into our DOJ-investigated institutions.

With almost 100,000 people on waiting lists, and more citizens institutionalized than in any other state, Texas ranks among the worst five states in the nation for disability services. Collin County has the lowest per capita funding for people with developmental disabilities in Texas. In cruel irony, Plano was recently named the wealthiest city in the United States.

In other words, the most prosperous city in America is at the bottom of the bottom for helping God's children most in need.

The lack of adequate care for people with disabilities is pervasive. Earlier this week, local news aired video from a Dallas County school bus showing a driver choking a student with disabilities. While most professional caregivers are compassionate, abuse is not isolated to certain areas, just as it was not isolated to the 1960s.

Caring for people is a matter of choice. Our state lawmakers can choose to end the waiting lists, while the federal government can chose to provide funds to upgrade education, housing and employment options. Our schools can choose to improve staff training and provide quality programs and supports. Our churches can choose to respond to God's word and "treat with special honor" those he created differently.

While these choices are not cheap, the costs pale in comparison to the destruction of families who have no choice at all.

Clay Boatright is president of The Arc of Dallas, and serves on the board of directors for The Arc of Texas. Clay and his family live in Plano; his e-mail address is clay@jnine3.org.

Appeals Court Hearing on the Fernald Case

Attempts to finally close the Fernald State School have met court challenges that have raised complex issues about deinstitutionalization, legal and human rights that have received less attention than deserved.

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The Arc offers some solid information and is available for email subscription for those with concerns regarding the issues.

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Appeals Court hearing today on the Fernald Case-- September 3, 2008
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PRESS RELEASE

September 2, 2008
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Advocacy Groups Hope that Appeals Court overturns Judge Tauro's Order

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Waltham: On September 3, the United States Court of Appeals for the First Circuit will hear arguments to decide the future of Fernald State School. Disability Advocacy organizations such as The Arc of The United States, the National Disability Rights Network, and United Cerebral Palsy all support Governor Patrick's decision to close the school and his appeal of a federal court decision.

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"Massachusetts is behind national trends in shifting resources from bricks, mortar and institutional expenditures to individually driven community based services and supports," said Board President Fred Misilo of The Arc of Massachusetts. "We have 5 state institution campuses for less than 1000 people while waiting lists grow for community living and employment services and in home family support. The state faces a budget crisis; we should not be using our limited resources to maintain and renovate institutions." The Arc

Some Things Aren't Funny!

The Arc offered the following commentary (click links to read the articles in their entirety):

Help The Arc Fight Offensive Portrayal of People with Intellectual Disabilities

Background
Tropic Thunder is an action/adventure/comedy scheduled for nationwide release on August 13 and promises to be one of the blockbusters of the summer. DreamWorks is the film's producer and Paramount is its distributor. The premier will be held in Los Angeles, California on Monday, August 11.

The film features popular actors Ben Stiller, Robert Downey Jr. and Jack Black as self-absorbed actors filming a big-budget war movie on location. Through a series of freak occurrences, they are forced to become the soldiers they are portraying. Stiller plays Tugg Speedman, a fading action star who earlier failed in his bid for an Oscar as "Simple Jack," a man with an intellectual disability. "Simple Jack" is featured as a film-within-a-film, with Stiller sporting a classic institutional bowl haircut and bad teeth (see poster below). The film within-a-film's slogan is "What he doesn't have in his head, he makes up for in his heart." A satirical plot synopsis quotes a critic as saying that Speedman's Jack was "one of the most retarded performances in cinema history."

Disability News offered:

There are those who view the word “retard” as offensive and demeaning, and think it fuels social stigma against vulnerable people. And there are others, like perhaps the R-rated film’s star, director and lead writer Ben Stiller (at left in an image from one of the studio’s marketing websites), who may think the word is inoffensive and a good complement to the film’s other gags, stunts, explosions and gross-out jokes.