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Gov’s budget continues the cuts
With a few exceptions, Governor Patrick’s proposed budget for the coming fiscal year, which he unveiled last week, appears to continue the trend in recent years of cutting funding for care for the intellectually disabled.
We see little to change our longstanding contention that the Department of Developmental Services community-based system, in particular, is not benefiting from the closures of four developmental centers. A few years ago, Health and Human Services Secretary JudyAnn Bigby promised that as a result of the phasedowns and closures of the Fernald, Monson, Glavin, and Templeton developmental centers, some $45 million a year was going to be plowed back into the community-based system of care.
There’s no question but that the developmental centers line item (5930-1000) has been cut deeply as the state facilities have been phased down in recent years. Under the governor’s FY 13 budget, this line item would be cut by an additional $20 million next year, a 13.1 percent reduction. This brings the total cuts in funding for the developmental centers to $55 million since FY 09.
But that found money does not appear to have benefited key community-based accounts such as Adult family supports, Turning 22, and the Salary Reserve to increase the static wages of direct-care human services workers in the community system.
First, let’s look at what would be increased in the governor’s FY 13 budget proposal for DDS and related accounts:
- The Community Day and Work line item (5920-2025) and the previous Transportation line item (5911-2000) would jointly be increased by $9.6 million under the governor’s proposal over current year spending. It’s hard to compare these line items with last year, however, because they have been merged together for some reason in the governor’s budget for next year. The Massachusetts Arc and the Association of Developmental Disabilities Providers are saying that the transportation component of the new line item is “short” by $3.1 million. We’re not exactly sure what they mean by that.
- The Community Residential Supports line item (5920-2000) would be increased by $31.6 million or 4.2 percent, while the State-Operated Group Home line item (5920-2010) would be increased by $12.9 million or 7.8 percent. As we understand it, however, the increases in these line items are intended primarily to accomodate residents being transferred from developmental centers targeted for closure. It’s unclear that anyone else in the community system will benefit from the increases. The Arc/ADDP are saying the state-operated group home account is still “short” by $4.1 million. Again, not sure what they mean.
- The DDS Administrative line item (5911-1003) would be increased by $2 million or 3.4 percent. This line item funds service coordinators, who arrange for services for clients in the community system. But it’s not clear whether there would be any benefit in that increase to the service coordinators, who have faced layoffs in recent years as their caseloads have skyrocketed. According to SEIU Local 509, a state employee union, the $2 million increase will cover negotiated salary increases within the DDS administration as well as office rental increases, while essentially level-funding staffing.
The rest of the DDS and DDS-related line items appear to be either cut or level-funded, which amounts to a cut relative to inflation. They include the following:
- The Adult Family Supports line item (5920-3000) would be cut by $5.5 million or 11.8 percent. This comes on top of cuts totaling 26.9 percent since FY 09. Those cuts were only partially restored last year through supplemental funding. The governor’s FY 13 proposal would wipe out that restoration. We’re not sure why this account always gets cut so badly because it would provide funding for families to keep people at home, which was a critical component of the governor’s Community First initiative, as we understand it. The Arc/ADDP are saying this reduction will hurt 2,000 families.
- The Turning 22 line item (5920-5000) would be level-funded at $5 million. This program has been cut by $2.7 million since FY 09. The ARC/ADDP are saying the program needs $10.5 million (more than double its current appropriation) to fully serve 710 additional intellectually disabled students expected to graduate from school next year.
- The Autism line item (5920-3010) would be essentially level funded at $4.6 million next year.
- The Salary Reserve line item (4000-0017) to boost the pay of direct-care workers would once again receive zero in funding under the governor’s FY 13 budget. The Arc/ADDP are calling this situation “devastating.”
- The Department of Education/DDS line item (5948-0012) would be cut by $50,000 from current-year spending. This is a joint program for youths with disabilities.
- The Massachusetts Rehabilitation Commission Supported Employment line item (4120-3000) would be cut by $369,400 or 15.1 percent.
- The Massachusetts Day Habilitation and Adult Foster and Family Care accounts (4000-0700), which are funded by MassHealth, would be “funded at maintenance,” according to the Arc/ADDP. This appears to mean that these programs would be maintained at their current levels next year. They have both been sharply cut in recent years.
The bottom line line is that while the administation has seen the need to continue its policy next year of cutting a wide range of community-based programs for the intellectually disabled, it hasn’t helped matters with its single-minded policy of closing the developmental centers. Not only hasn’t the closure policy provided more community-based funding, but it has clearly delayed community-based placements for thousands of people waiting for that care.
DDS stonewalling on cost, care information
(Part 2 of 2-part series on transparency issues in the Patrick administration)
The Patrick adminstation contends it is striving to be “transparent” in the way it conducts the public’s business, and touts its Open Checkbook website among other initiatives.
But when it comes to getting public information from individual agencies within the administration, the record of transparency doesn’t always live up to the billing. We think our own recent experience with the Department of Developmental Services is a case in point.
We’ve been fighting with DDS for several years over public information requests, but the agency’s disinclination in recent months to provide requested information seems to have gotten worse.
It now takes months to get even the most minimal public records in response to our requests. And DDS recently cited the letter of the Public Records Law in claiming they have no obligation to answer any questions about records that they have provided to us. Also, in two cases in the past year, DDS cited confidentiality requirements in refusing to release what we think, in at least one of the cases, are clearly public documents.
Meanwhile, even a state lawmaker has been unable to get information out of DDS on deaths in the agency’s system. State Rep. Anne Gobi, a Democrat from Spencer, wrote to DDS Commissioner Elin Howe in mid-October, asking for information on the number of residents who had been transfered from the developmental centers to community-based group homes and how many of those residents had died after the transfers. As of this month, Gobi’s staff said she had not received any response to her inquiry.
Here are some more details about our efforts to get records and information from both DDS and the Executive Office of Health and Human Services:
- In October, COFAR submitted a request similar to Gobi’s to DDS for information and public records concerning the number of developmental center residents who have been transferred to group homes since 2008 and the number of those residents who have died.
In that request, COFAR also asked for the number of community-based group homes that have been built to house former developmental center residents. In early November, a DDS attorney responded that the agency was in the process of searching for the requested records. There has been no further word since then. We wrote to DDS on January 17, seeking an update on the status of our request, but have received no response to it.
- In October, the DDS general counsel denied a request COFAR had first made in July for records detailing the costs of medical, nursing, clinical, and therapeutic services for individuals in a group home program operated by the May Institute, Inc.
COFAR initially filed the request for the records concerning the May Institute with both DDS and EOHHS. In August, an EOHHS official responded that that agency was in the process of searching for the records. Then, in September, a DDS attorney stated that DDS was searching for the same documents.
There has been no further word from EOHHS since August regarding the records. In October, however, the DDS general counsel appeared to reverse the Department’s September position by stating that documents detailing funding for medical or clinical services for individuals would be part of their individual client records and therefore exempt from disclosure under the Public Records Law.
COFAR appealed the denial to the Supervisor of Public Records in October, suggesting that DDS redact any names or any other information that might identify individual clients. In the October appeal, COFAR maintained that it was seeking only to find out the total cost to taxpayers of care for community-based clients such as those in the May Institute program. Should DDS refuse to provide that information, “the public will have no way of knowing basic details about the provision and funding of these kinds of public services,” COFAR’s appeal added.
To date, the Public Records supervisor has not ruled on COFAR’s appeal.
DDS similarly denied a request in July from COFAR for information about the death of a man in a group home earlier that month, four days after he had been transferred there from the Templeton Center. In that case, the Public Records Supervisor upheld DDS’s denial, accepting the Department’s argument that the information was private.
- In July, COFAR asked DDS for detailed budgetary information regarding the Monson, Templeton, and Glavin developmental centers, which have been targeted by the administration for closure. In response, DDS in August provided only a single line item amount for each facility, representing the total spending for that facility. There was no budgetary breakdown of the line item for any of the facilities.
After COFAR appealed to the Public Records Supervisor, DDS, in late October, provided an “aggregated” spreadsheet containing numerous line items for all three developmental centers. However, this time there was no separate breakdown for each facility. Moreover, the total aggregated spending amounts for each of three fiscal years in the October response did not correspond with the totals provided in the August response.
As a result, COFAR sent an email to DDS asking why there was such a big difference, in particular, between the $176.3 million in total spending listed in the October spreadsheet for the three facilites in FY 2009, and the $57.8 million listed in the August response for the same three facilities.
In a letter sent to COFAR in response, a DDS assistant general counsel wrote that the agency “is not required to answer questions…” under the Public Records Law. So much for letting us, and the public, in on the inner workings of the state’s finances.
Earlier this month, an attorney with the Public Records Division, sent us a nice email, apologizing for the delay in responding to our October appeal regarding the May Institute documents, and saying:
I know that you are working very hard to help those in the Commonwealth who are the most in need, and that receiving records from custodian’s, like DDS, is a crucial part of assisting those individuals.
Now, if only DDS wouldn’t balk at simple requests for information, and showed a dedication to following through on the administration’s claims of transparency.
Open Checkbook could be more open
(Part 1 of a 2-part series on transparency issues in state government)
Despite its promises of greatly increasing government transparency, the Patrick administration’s new Open Checkbook website seems to me to fall a little short of the hype.
Open Checkbook was launched in December with lots of claims made about how it was going to give the average Internet user a powerful new lens into the inner workings of public finances. The state budget office in conjunction with the Comptroller and Treasurer jointly instituted the website in response to legislation that sought to upgrade the state’s relatively low ranking in a state-by-state transparency survey by MassPIRG.
Open Checkbook is divided into two major sections, State Vendor Spending and Payroll & Pension Spending. I found the vendor spending section to be disappointing in one major respect. It displays a lot of about where the money to vendors comes from, which is very good, but no information on where the money goes, i.e., how the vendors spend it. (I haven’t yet tried out the Payroll & Pension Spending section.)
I used the vendor portion of Open Checkbook to look up one specific company, the May Institute, Inc., for Fiscal Year 2010. This is the same nonprofit provider for which COFAR has unsuccessfully sought cost information lately from the Department of Developmental Services.
I clicked on one particular category of funding for that vendor and got a long list of dates followed by payment amounts. By clicking on July 14, 2009, for instance, I was able to find out that DDS paid the May Institute $367,000 on that date for residential and day services. It doesn’t appear to be possible to find out much more detail about that payment.
What is good is that I was able to do a refined search, based on the residential and day services account, and find that a total of $26.9 million was paid to the May Institute under this account by DDS in FY 2010.
The bad news, as noted, is there is no way to track where the money goes after it gets to the vendor. For instance, there there appeared to be no way to view administrative expenses for the May Institute or to find data on the compensation of executives of the agency. It would seem that a checkbook should tell you about both incoming and outgoing funds.
Also, the site doesn’t display contracts, as some similar state sites do; and the data on Open Checkbook doesn’t go back before Fiscal Year 2010. An official with the state budget office said displaying actual contracts is “on our list” for improving the site, but that hasn’t been decided yet.
It’s also worth noting that much of the information available on Open Checkbook is available as well on the state’s longstanding Uniform Financial Report website for vendors. In fact on the UFR website, you can find total payments to vendors broken down by government agency as well as spreadsheets that do show where the money is going, including amounts paid to executives of the vendor agencies. (That salary information may be incomplete, in several cases, as we have reported. But at least some of it is available.)
The UFR site, for instance, shows that a total of $30.29 million was paid by DDS to the May Institute in FY 2010 as part of a total of $104.4 million in revenue to the vendor. Admittedly, the information on the UFR site isn’t nearly as up to date as the Open Checkbook site. But you can find a lot of information on the UFR site that isn’t available on Open Checkbook, such as the fact that the May Institute had $101.6 million in expenses in FY 2010, including $396,716 in compensation to its CEO and $56 million on direct care salaries. Also the UFR information goes back to FY 2002.
What the UFR site doesn’t appear to show, which Open Checkbook does, is a breakdown of funding going to vendors per budgetary account, such as the Residential and Day Services account.
One other problem I had with Open Checkbook has to do with its presentation of a large amount of abbreviated or otherwise highly techical information. For instance, the the funding listed for the May Institute was broken down into five categories on the site, including Grants to Nonpublic Entities, Legal Support Services, Medicaid, Purchased Human and Social Services for Clients/Non Medical, and a fifth and largest category dollarwise, titled “PurchH&Ss For Clit.Med/HC Rel (MM3).” Spending under this category was listed as $23,047.235.83. What exactly does “Clit.Med/HC Rel (MM3)” stand for?
I was able to hover my cursor over the acronym, and up came the following definition, which didn’t clear up the confusion very well. The definition was:
Payments pursuant to contracts with organizations to purchase social services or programs with medical or healthcare related components on behalf of specifically identified clients or a specific target group. Includes services rendered by an individual with payment to a corporate entity. Federal funds are reported as sub-recipient payments.
The “MM3” part of the acroym is an object code classification for the payments. The Open Checkbook site FAQ page states that individual object codes are defined in the “Expenditure Classification Handbook” maintained by the Comptroller’s Office. But unfortunately, the link on Open Checkbook FAQ page to the Comptroller’s Handbook didn’t work.
As administration officials have said, Open Checkbook is a work in progress.
Alleged assaulter of disabled man is a no-show on trial date
Sheila Paquette’s long-running quest to bring the man who allegedly assaulted her intellectually disabled brother to justice took yet another turn this week.
After months of delay, Monday, January 9, marked the date for the trial of John Saunders, a former care worker in the group home in which Paquette’s brother, John Burns, lives.
The bad news is Saunders was a no-show at Falmouth District Court, to which Paquette and five witnesses in the case had traveled from their homes in western Massachusetts. But Paquette was not deterred or defeated. The good news is that the judge in the case ruled that Saunders had defaulted on his bail and should not be released prior to trial if he is picked up on a violation of any kind.
But Paquette said the judge’s ruling was “a really positive thing for us. If he (Saunders) gets picked up, he’ll be in jail and there is no way he can avoid showing up for trial again.” The question is when, if ever, Saunders will be picked up. Police are unlikely to go looking for someone wanted for allegedly assaulting a disabled man.
Nevertheless, Paquette believes she is proving by sticking with the case that the system can be made to work for crime victims, even when those victims are intellectually disabled. “The state and the public should know that we will take these cases to court,” she said. She said she has started a legal fund to raise money not only to pursue her brother’s case, but to help others pursue similar prosecutions of assaults against people with disabilities. “It’s a difficult process, and I think a lot of people are intimidated by it,” she said.
Paquette said her main concern now is that her brother may have become depressed in recent months and that his condition may be connected to the assault. “It’s one more assault he couldn’t manage,” she said, noting that her brother had been assaulted on two occasions in group homes prior to the alleged assault by Saunders.
Do we really want managed care for the disabled?
Hang Lee struggled to get his words out in testifying on Wednesday morning before a packed public hearing in Boston on a proposal by the Patrick administration to introduce managed care into the delivery of services for the disabled.
Hang said he is concerned that under the proposal, he and thousands of other disabled people who are eligible for both Medicaid and Medicare, will see reduced funding for medical equipment and services they currently need and might need in the future.
Hang suffers from cerebral palsy and scoliosis, debilitating and progressively worsening diseases of the spine and nervous system that he anticipates will leave him completely immobilized in a few years. “I am in constant pain and emotional agony,” said Hang, his face contorted with the effort to speak each sentence.
He said he anticipates he will evenually need a body brace, which costs thousands of dollars. “A cut in services means a reduction in funding for the brace,” he said.
Hang was one of dozens of people, who are dually eligible for Medicaid and Medicare-funded services, who testified at the hearing held by the Executive Office of Health and Human Services. Under the EOHHS proposal, private vendors, known as Integrated Care Organizations (or ICOs) would be hired to manage medical, prescription drug, and disability services to thousands of those people.
Medicaid helps fund a range of residential, employment, and other services for persons with disabilities, while Medicare funds medical care and prescription drugs for many of those same people. The EOHHS maintains that their proposed system would cut costs of care by eliminating overlap, redundancies, and a lack of coordination between Medicaid and Medicare. Medicare and Medicaid will spend a projected $3.85 billion in 2011 on health care for dual eligible adults ages 21-64 in Massachusetts, according to EOHHS.
COFAR and the SEIU Local 509 state employee union called for exempting the management of residential care, day and transportation, service coordination and other services from the proposal. SEIU representative Stu Dickson maintained that while the union “agrees with the need to address needless costs of medical procedures, tests abuse, billing and administrative redundancies, etc., this is profoundly different than the care of human beings.” Dickson contended that in implementing the proposal, Massachusetts would compete with other states in a “race to the bottom” in care for the disabled.
“This proposal appears to be another step in this administration’s quest to privatize key services to the state’s most vulnerable people and to remove government from its responsibilities in that area,” I testified on behalf of COFAR.
Even the human service providers are not sold on further privatization in this area. In a December 16 email to members, the Association of Developmental Disabilities Providers stated that “the Arc (of Massachusetts) and ADDP do not believe there is current research available that validates significant cost savings attained by turning over large parts of State Medicaid programs to managed care companies.”
As did Hang, many in packed hearing on Wednesday said their main concerns were the retention of consumer choice and access once a corporate entity was making decisions on who gets what services.
Other speakers maintained that they had spent years, in some cases, in finding doctors and therapists for their conditions and might lose those specialists under a managed care system. “My doctors all work together,” one woman testified. “My concern is I’m enrolled in a managed care plan and my doctors are not enrolled in it, what do I do?”
“We have to make sure the big corporations don’t just look at the bottom line,” said one man who relies on Medicaid-funded personal care attendants for his disability.
Others called for more planning for oversight of the ICOs, and more accountability. Dale Mitchell of Ethos, a nonprofit provider of services to the elderly and disabled, called for an “independent care management entity” that would oversee the managed care system and prevent it from “chipping away at consumer control and input.”
Victoria Pulos of the Mass. Law Reform Institute said the involvement of consumer-based organizations is needed to establish “accountability systems” to oversee the ICOs. And Laurie Martinelli of the National Alliance on Mental Illness maintained that the “role of families needs to be spelled out” in the EOHHS proposal, in addition to more planning for issues such as transportation of clients.
Let’s hope the folks at EOHHS are listening to all this.
Our question to Secretary Bigby
It was the same story over and over at a public hearing this past Friday, presided over by Secretary of Health and Human Services JudyAnn Bigby.
Speaker after speaker urged Bigby and her panel of EOHHS assistant secretaries and commissioners at the Agganis Arena at Boston University not to cut the budgets of their programs. The hearing room was packed with some 300 people, many of them disabled, and many of them program providers.
Some of those testifying, such as Hang Lee of Multi-Cultural Independent Living Center of Boston and Paul Spooner of the Metro West Center for Independent Living, even urged increased funding for their centers — an additional $1.1 million in each case.
SEIU organizer Stu Dickson (at table) testifies before EOHHS Secretary JudyAnn Bigby at state budget hearing on Friday.
A panel of advocates with the Association of Developmental Disabilities Providers simply asked for the budget cuts to stop. “We ask you to remind the governor (who placed $350 million in the state’s rainy day fund earlier this fall) that it’s still raining,” said Gary Blumenthal, president of the organization. Ten thousand families are without support services from the Department of Developmental Services, among the other results of years of budget cutting, he said.
But it doesn’t seem Bigby will be able to do much to push back against the cuts, much less give Lee and Spooner additional funding, if the governor’s budget people decide to take aim once again, as they’ve done all along, at critical DDS programs. Despite an uptick in state revenues that have brought those revenues back to the levels of Fiscal Year 2008, prior to the nation’s economic meltdown, Bigby stated in a notice sent out prior to Friday’s hearing that:
FY 13 will be challenging and require cuts and reductions and the need for the Administration to make difficult decisions.
Sounds like Administration and Finance Secretary Jay Gonzalez may have already told Bigby to prepare for the worst.
Yet, despite the continuing bad budget news, most of those at the portion of Friday’s hearing devoted to DDS issues still apparently retain the faith that the administration’s plan to close four state developmental centers will somehow rescue them. Several speakers praised Bigby for her efforts to phase down the Fernald, Monson, Templeton, and Glavin centers, apparently hoping that the budgetary “savings” in doing so will be directed to their programs.
Since FY 09, the administration has cut the developmental center line item in the state buget by more than $45 million. But, as I reminded the audience (including Secretary Bigby) when I got my three minutes to speak, we’ve seen no evidence thus far that the community line items have benefited from the cuts in the developmental center account.
Since FY 09, cuts in the community-based accounts include reductions to adult family supports (26.9 percent cut), community transportation (17.6 percent), community day and work (3.8 percent), and Turning 22 (35 percent). As the ADDP has pointed out, direct care workers in the DDS community system haven’t gotten a raise in their relatively meager pay and benefits in four years.
Meanwhile, the list of people waiting for community-based residential care in the state has only grown longer as the administration has transferred residents of the developmental centers to community placements. “Where is the promised expansion of the community system” that was supposed to happen as a result of the developmental center closures? I asked Bigby in my testimony.
Later, I spoke to an EOHHS fiscal executive at the hearing and got no answer to my question from him either.
One of the few at the hearing who understands the extent of the negative impact the developmental center phase-downs have had so far is Stu Dickson, a DDS service coordinator and an organizer with the SEIU Local 509 state employee union. Dickson urged Bigby to restore $5 million to the DDS administrative account, which funds the service coordinators, who arrange for and monitor services for community-based clients.
Dickson later said that despite the ongoing closures of the four developmental centers, DDS has not assigned any additional service coordinators to the community system. The department has repeatedly laid off the coordinators, whose caseloads have grown to nearly unmanageable levels.
Our question to Secretary Bigby and to the opponents of the developmental centers remains: What has the administration done so far, and what will it ever do, to benefit the community system through the developmental center closures?
DDS providers seeking to cut a key lifeline
One of the key functions of the Department of Developmental Services is performed by service coordinators.
Their job is to make sure clients are actually getting the services in the DDS community-based system that are specified in their plans of care and for which the state is paying. They also determine the most appropriate sources of services for clients, based on their knowledge of the clients and available programs in the DDS system.
DDS even relies on these people to help monitor conditions in group homes. During a phone conversation a couple of years ago, the head of the DDS’s group home licensing office stated that service coodinators ensure that every group home in the state is visited at least six times a year and that conditions in them are checked.
DDS Commissioner Elin Howe has called service coordinators “the heart and soul of our agency.” The SEIU state employee union, Local 509, stated that in its collective bargaining agreement with the state, DDS recognizes service coordinators as performing one of the agency’s “most essential functions in the community-based service system.”
Yet, due to repeated budget cuts in recent years, the average caseload for service coordinators has been rising to the point where it is now about one service coordinator to 60 clients. This is more than three times the standard caseload recommended for social workers in this field, according to the SEIU, which organizes service coordinators and other human serivces workers.
At a budget hearing scheduled for Friday (December 9, from 2 to 6 p.m. at the Agganis Arena at Boston University), advocates will plead for more funding for a wide range of community-based line items that have also been cut in recent years. These pleas are coming in the wake of an announcement by Health and Human Services Secretary JudyAnn Bigby late last month that the state budget for the coming fiscal year will probably necessitate further cuts in these programs and that the administration will have to make “difficult decisions.”
But apparently not all of these advocates are rooting for the service coordinators. The Association of Developmental Disabilities Providers has actually suggested that Bigby further cut the DDS administrative line item, which funds the service coordinators. In the last line of a recent email, informing its members of the Friday EOHHS hearing, the ADDP stated:
ADDP will urge any spending reductions to be focused on the state’s own administrative and service system and to protect the more cost effective and inclusive community delivery systems. (My emphasis)
Perhaps the ADDP will respond here to tell us why the service coordinator positions should be cut further and the caseloads should grow even larger. Could it be that the state-funded providers, who in turn fund the ADDP, don’t really want anyone looking over their shoulder and monitoring the services they are delivering or the conditions in their group homes?
In contrast, the SEIU is asking that the administration to restore $5 million to the DDS administrative line item. The SEIU contends that between 2007 and 2010, 82 service coordinator positions were cut, placing Massachusetts in the bottom 10 percent of the country for monitoring and overseeing the provider contracting system and the care it provides. In a statement, the SEIU contended that:
These (service coordinator) jobs more then pay for themselves by promoting skill development and greater independence in the DDS population. Left to their own devices, programs settle for providing ‘custodial’ care which perpetuates a burdensome, wasteful and inefficient expense to state government.
The SEIU last year tried unsuccessfuly to reopen the federal court case that brought about improvements in care in the DDS system since the 1970s, arguing that the cuts in service coordinators at that time were a violation of a key court order that DDS provide sufficient, adequately trained personnel to meet clients’ needs.
The Globe tells half the story about Fernald
A front-page article that ran Thanksgiving Day in The Boston Globe depicts with great sensitivity the lives of four men who were moved out of what was then the Fernald School 40 years ago and have lived ever since in the community.
The problem is that the piece, by Globe columnist Yvonne Abraham, implies that the Fernald Developmental Center of today remains the same over-crowded, poorly run institution that it certainly was for these men when they lived there from the 1950s through the 1970s. At the very least, the story neglects to mention the dramatic improvements that were made in the conditions at Fernald and elsewhere after the federal court assumed oversight in the 1970s of care delivered in Massachusetts to persons with intellectual disabilities.
And the story mistakenly implies that only community-based care is appropriate for the residents of Fernald and other state developmental centers today.
From the all-caps headline (“CELEBRATING THE GIFT OF BEING FREE”) onward, the article paints Fernald unrelentingly as a dark and isolated prison. While that was true up through the 1970s, the untold story is that Fernald and the five other remaining developmental centers in Massachusetts today are state-of-the-art facilities that are highly integrated with their surrounding communities and serve a population that needs their high level of services.
Abraham, however, doesn’t seem to want to discuss that part of the story. At first, it wasn’t entirely clear to me why she portrayed Fernald in such a uniformly negative light throughout the story. Not only is there no mention in the story of the improvements at Fernald since the 1970s, but there’s not even any mention of the fact that Fernald and three other developmental centers in Massachusetts have been targeted for closure by the Patrick administration. Or that guardians of 14 remaining Fernald residents oppose the closure and have kept the facility open for almost a year and a half beyond its scheduled closing date after having filed administrative appeals of the transfers of their wards from the center.
Why not mention all of those things that have been going on at Fernald currently and in recent years and place the story of the facility in a modern day context? It would have been a more interesting story, I think, had Abraham noted the contrast between the four men who are thankful today that they were able to leave Fernald, and the 14 guardians who today believe Fernald is the best place available for their loved ones.
It was only as I was nearing the end of Abraham’s piece that I came across a paragaph that made clear to me what appears to be her agenda. She stated:
The world has caught up with (the four men who left Fernald and a former worker who arranged for their move in 1971 to a group home outside of Fernald.) The goal now is to keep people with disabilities in the community, to help them realize their potential and enrich their surroundings.
Yes, it was now clear that this article was yet another in a long line of journalistic paeans to “community-based” care for people with intellectual disabilities. State-operated institutional care — bad. Community-based care — good. That’s the over-simplified storyline onto which too many journalists seem to feel the need to grasp, while ignoring the subtleties of recent history and even federal law.
Community-based care is the goal for many, but not for everybody. The U.S. Supreme Court, in Olmstead v. L.C., recognized that for some people with the most severe and profound levels of intellectual disability, institutions such as Fernald may well provide the most appropriate care.
Moreover, the community system today does not live up to the utopian ideal that Abraham’s piece sets for it. I’m sure that three of the former Fernald residents in Abraham’s story do live now in a “sweet bungalow” in Hyde Park, and that they do have a “good life,” in which they go to day programs where there is tai chi, singalongs and crafts. I have no doubt that Abraham was struck in spending time with these men by “how much of their potential was squandered” at Fernald 40 or more years ago and by “the joy of the lives they’ve salvaged” in the community.
But while there are many success stories in the community system, that largely privatized system is beset today with widely acknowledged problems of high turnover and poor training of direct-care staff, and abuse and neglect. At the same time, state contracts worth hundreds of millions of dollars held by vendors to run community-based group homes are poorly overseen by the state, resulting in the potential for widespread waste, fraud, and abuse in their business practices. The media in this state have not been covering those issues, but the media in New York State have been. (See this and this.)
We think it is a tragedy that the Patrick administration apparently views care for the intellectually disabled in this same simplistic light of institution-bad and community-good, and is shutting the four developmental centers in budget-cutting moves. We are waiting for the day when the media take a more nuanced view of this issue, and at least recognize that there is another side to the story.
We strongly urge Abraham and other journalists to visit the Fernald, Glavin, Monson, and Templeton Centers, all of which are steadily being emptied of their staff and residents, before it’s too late. They will see for themselves the wonderful level of care that takes place in those centers, and will note that there are no young, high-functioning residents like Albert, Curtis, Richard, and Joe, left in them today.
Funding for DDS clients falling through the cracks
There are few burdens greater than having to care for a loved one with a severe intellectual disability, particularly when the state declines to provide any help.
At a public hearing earlier this week, members of the Legislature’s Children, Families, and Persons with Disabilities Committee heard stories from a number of people whose loved ones have fallen through the cracks in the system.
The Committee is considering a number of bills intended to help people who find themselves just outside of the Department of Developmental Services’ strict eligibility standards, or for whom, there just hasn’t been any funding for community-based residential, day, work, and other programs due to years of budget cuts. There’s some hope that a recent uptick in state revenues will translate into some additional funding of these programs.
Linda Boucher testified that her son attended special education programs from the time he was 3 until he reached the age of 22. At that age, special education services end, and people needing services must apply to DDS, which uses a “rigid” standard to determine eligibility. If a person’s IQ measures above 70, eligibility is denied even if the person has significant problems in adaptive functioning, including very low conceptual, practical, and social skills.
Boucher’s son scored 75 on an IQ test and was denied DDS services. He had been in a day program, she said, but has been home ever since. Boucher has a full time sales job that often requires her to be away from home for as much as 10 hours at a time, and sometimes requires her to be away from home overnight. It’s as if her son is under house arrest, she said.
“Where do I go? I need help,” Boucher said, her voice cracking with emotion. Ironically, Boucher worked in the Department of Mental Health during the Dukakis administration and helped develop many of the community-based programs for persons with intellectual disabilities that are now being cut. She said no one from DMH or DDS will now return her phone calls.
One bill before the Committee (H. 3527 ) would require the DDS to use a less restrictive standard in determining whether a person has an intellectual disability and is therefore eligible for DDS services. The bill would bring the state in line with the American Association on Intellectual and Developmental Disabilities, in establishing eligibility for DDS services for IQ scores of “approximately” 70 or below. This would prevent the rigid cutoff now used by DDS in excluding people from services.
One woman testified that she is concerned she will be forced to quit her job to care for her son, who is now 21 and needs one-on-one supervision. He is not intellectually disabled, his mother said, but nevertheless lacks most social skills. He currently attends a special education facility and is able to hold down a job. But because he is not able to control his behavior, he must be supervised at all times.
Another bill before the Children and Families Committee (H. 983) would provide an additional $23.4 million in funding for DDS community-based programs for persons with special needs who are either turning 22 or have graduated from high school.
However, this bill would also direct that funds from the sale of developmental center properties be earmarked for community-based programs for persons turning 22. We would support that language if the proponents of the bill would, in turn, support the continued operation of the developmental centers for those who choose to live in them. Unfortunately, there’s not much chance of that happening.
It’s not only persons with disabilities who slip through the cracks in the DDS system. There are also the direct-care workers who tend to be underpaid and under-trained, particularly in privately run group homes that operate under contracts with DDS. One bill (S. 45) would establish a state task force to study the average compensation, level of training and turnover of these workers.
Lisa Gurgone, Executive Director, of the Mass. Council for Home Care Aide Services, noted that direct-care workers tend to struggle to make ends meet, and termed those workers “a piece of the puzzle left out of health care reform in Massachusetts.” She and other speakers maintained that with the numbers of elderly and disabled people projected to grow rapidly in coming years, the state needs to develop a new workforce strategy to meet the demand. The task force is a first step in that direction, they said.
One other bill, which COFAR supports, would provide easy public access to a wide range of information about direct-care worker turnover and compensation as well as compensation of top executives of DDS contractors. The bill (H. 975) would require all of that information to be published on the DDS website. (The Arc of Massachusetts, which is heavily funded by DDS contractors, predictably opposes this bill.)
Finally, COFAR strongly supports H. 2683, a bill filed by Rep. Angelo Scaccia, which would establish an independent office of quality assurance that would monitor the care of intellectually disabled persons throughout the DDS residential care system. COFAR has raised a number of questions in recent weeks about the current DDS licensure and certification system for community-based group homes. (The Arc, of course, opposes this bill as well.)
Trying to make sense of DDS’s budget numbers
It’s hard to figure out what to make of the administration’s spending decisions when it comes to providing services to people with intellectual disabilities in Massachusetts.
On the one hand, since Fiscal Year 2009, the administration and Legislature have cut most community-based line items, including adult family supports (26.9% cut), community transportation (17.6%), community day and work (3.8%), Turning 22 (35%).
Not suprisingly, the developmental centers line item in the budget has been cut since FY 09 by $45.4 million, or 24.2%. (In fact, based on a set of numbers provided by the Department of Developmental Services, the budgets of the Templeton, Monson, and Glavin developmental centers alone were cut by almost 70 percent between FY 09 and FY 11.)
Yet, at the same time, the community residential line item (which funds contract-based care in privately operated group homes) has been raised since FY 09 by $182.2 million, or 32%. In addition, the state-operated group home line item has been boosted by $27.4 million, or 19.9 percent, in that time.
These two community residential and state-operated group home line items have been boosted by a total of $209.6 million, while the cuts have totaled $87.4 million during the same period (not counting the planned phase-out of funding under the Boulet lawsuit). The bottom line is the grand total of all DDS line items is $34.6 million higher in the current fiscal year than it was in FY 09.
What exactly has been going on here? We’ve asked DDS for information on where residents of the developmental centers targeted for closure have been transferred. We don’t believe very many residents have opted to live in privately operated group homes. So it remains a mystery to us just why the administration has needed to boost the community-residential line item by more than $180 million.
It’s true there are potentially thousands of people waiting for community-based residential care. But if indeed more than $180 million in new state dollars have been put toward accomodating people waiting for residential services, why has the administration been cutting funds for transportation, day programs, family support, Turning 22 and other programs for those same people?
It would seem that had the administration pared back the increase in the community residential line item to a modest $100 million increase since FY 2009, they could have prevented the cuts in the other community line items at at least held them harmless. It’s strange because the administration’s funding decisions have left it open to the charge from the Association of Developmental Disabilities Providers that the administration has failed to back its “professed interest in Community First,” an initiative intended to boost community-based services choices and spending.
In the meantime, DDS has denied a request by COFAR for records detailing community-based costs of a particular community-based residential program. We’ve been seeking to compare costs and services under this particular contract with the budgets of the Templeton, Monson, and Glavin Centers from FY 2009 to the present. (We don’t believe that the cuts in the developmental center budgets will save money in the long run because these same services must be funded in community-based accounts if they aren’t funded under the developmental center budgets.)
We asked for both a breakdown of the Templeton, Monson, and Glavin budgets and records detailing the costs of medical, nursing, clinical, and therapeutic services provided to residents of the group home program. In a letter dated October 23, DDS’s general counsel stated that the documents we requested concerning the group home program are part of DDS clients’ records and are therefore exempt from disclosure.
COFAR has appealed the denial to the state Division of Public Records, arguing that we are not seeking information that identifies any specific individuals. What we want to find out is which agency or agencies both fund and provide the medical, nursing, clinical, and therapeutic services under this contract, and how much these services cost state taxpayers in total.
We believe DDS can provide the information we are seeking without violating the privacy rights of the individuals in this program. Should DDS refuse to provide this information, the public will have no way of knowing basic details about the provision and cost of these kinds of public services.
COFAR blog 