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DDS, in dispute with parent over care of her disabled son, seeks to remove her as guardian
Apparently unable or unwilling to resolve a dispute over the proper residential placement for a developmentally disabled man, the state is seeking to remove the man’s mother as his guardian.
The Department of Developmental Services has filed in Middlesex Probate Court to remove Patricia Feeley, a COFAR Board member, as guardian of her 27-year-old son, Michael, and to appoint James Feld, a Woburn attorney, in her place.
Feld is described in the petition only as an “advocate” for Michael Feeley, but DDS acknowledged in a court document that Feld had never previously met Michael.
DDS is not alleging any abuse or neglect of Michael, and in fact, has described Feeley in court documents as “devoted to him” and “concerned for his well-being.” However, the Department contends that Feeley has rejected several suggested residential placements for Michael and is not acting in his best interest. And DDS is further alleging that Feeley’s home, where Michael has lived his entire life, is not safe because it has excessive “clutter” in it.
Feeley has actively sought for several years to place her son, who has type 1 diabetes, in a suitable DDS facility. She maintains that the real reason DDS is seeking to remove her as her son’s guardian is that the Department doesn’t want to provide a residential facility for him with 24-hour nursing care.
“The Probate Court is the wrong forum for this case,” Feeley maintains, adding she would be “devastated” if DDS succeeds in removing her as Michael’s guardian. A pre-trial conference in the case was scheduled in Probate Court on Thursday.
Michael, who has profound intellectual disability, is non-verbal and is unable to dress or bathe himself. Feeley said she was told his IQ was too low to measure. DDS’s petition to appoint Feld as guardian suggests that Michael be moved to a group residence in Chelmsford that Feeley noted does not have continuous, on-site nursing.
A friend and advocate of Feeley’s, who visited the North Chelmsford residence with Feeley last summer, maintained that the nurses there travel among several residences, one of which is in Lynnfield, about an hour away. The friend contended there are no nurses on site in the Chelmsford residence during the evening shift.
Feeley contends her son, who requires as many as seven injections of insulin per day, needs a residence with 24-hour, on-site nursing care. Feeley, 65, who works as a part-time clinical lab technician and is a certified nurse assistant, currently administers the injections herself, monitors Michael’s blood glucose, and personally provides all other care at home for him. Michael’s extensive care needs prevent her from working full time.
Feeley’s assessment of her son’s medical needs is backed up by a May 28, 2010 letter from a physician at Children’s Hospital in Boston, who wrote that Michael’s blood glucose spikes at times “for no apparent reason,” and that “it is not possible to predict when that might occur.” The doctor’s assessment continues: “A nurse needs to be present and able to attend to Michael’s needs at any time to avoid a delay in Mike receiving appropriate medical intervention.”
DDS, however, contends that Michael does not need 24-hour, continuous nursing. The Department has also alleged that Feeley’s home, where Michael has lived for his entire life, is unsafe for him because it contains stacks of newspapers and magazines in the hallways and other rooms, including the kitchen.
But Feeley denies that her home is unsafe, and her attorney, Stephen Sheehy, contended that the clutter issue is a “red herring.” Sheehy maintained that the issue is not germane because Feeley herself is seeking a suitable residential placement for her son, outside of her home. He added that DDS has failed to provide a clinical document, justifying its decision not to provide a setting for Michael with 24-hour nursing care on site.
Moreover, Sheehy noted, DDS last year informed Feeley that Michael was not entitled to a DDS care plan, known as an Individual Support Plan (ISP), which would specify nursing services for him, because he was not receiving any services from the Department.
Asked if he had any idea why DDS would seek to remove Feeley as her son’s guardian, given that her son is not currently served by DDS, Sheehy responded, “I don’t know. That’s one of many bizarre things about DDS’s involvement in this case.”
DDS contends that it first raised the issue of clutter in 2008 when an assistant DDS area director visited Feeley’s home. However, the Department did not act at that time to remove Feeley as her son’s guardian. Michael has lived at home for an additional five years since then. Feeley says that no one at DDS ever mentioned the issue of clutter in her home to her until last summer. In addition, DDS Commissioner Elin Howe stated in a letter to Feeley in 2011 that “it appears that Michael is doing well in his day program [which is not a DDS program] and living at home.”
In an affidavit attached to the DDS petition to remove Feeley as guardian, Alfred Nazzaro, director of the DDS Lowell Area Office, maintained that DDS “first tried to notify the Public Health authority (building inspector) [about the alleged clutter] but was unable to get any official to publicly confirm the danger, and on information and belief, Mrs. Feeley continued to deny both Department and Public Health officials access to her home.” Nazzaro’s affidavit did not state when the building inspector was contacted.
Feeley contends that no local health officials ever contacted her, and that she never denied anyone entrance to her home.
Also, while DDS depicts Feeley as being unreasonable in her alleged rejections of their proposed placements for Michael, court documents show that in at least one case, Feeley had accepted a proposed placement in writing, but that DDS later changed the terms of a verbal agreement with Feeley concerning nursing services that would be made available at the facility.
Nazzaro’s affidavit stated that Feeley had written him in early June 2009, accepting an offered placement at the Hogan Regional Center for Michael, and had urged that it be done as soon as possible, based on the availability of on-site nursing there. Her letter added that she had “finally found contentment for the first time since arranging for Michael’s future.” But, as the affidavit stated, it was DDS that subsequently changed the offer, in a meeting on June 30, when “it was determined that Michael did not need 24-hour nursing services.” Nazzaro’s affidavit stated that, “Once Mrs. Feeley was informed that 24/7 nursing services would not be recommended…Mrs. Feeley rejected placement at Hogan.”
Feeley denies that she actually rejected the Hogan placement at that point. In fact, she contends she was never told 24/7 nursing services would not be recommended at Hogan, and asserts that in a meeting which occurred months later, no one voiced disagreement with Michael’s diabetes treatment plan.
In a motion filed to dismiss the DDS petition, Sheehy also alleged several irregularities in the Department’s filing, including the lack of a signature of a human being on the petition document. On the signature line of the petition, which states that the document is signed under the penalties of perjury, someone had written only “Department of Developmental Services.”
“I don’t know who’s accusing me,” Feeley maintained.
Sheehy’s motion to dismiss stated that an entity such as DDS “can’t execute a document under the penalties of perjury, because such penalties can only attach to a human being…”
The ‘Real Lives’ bill hasn’t gotten any more real
Last year, we raised a number of questions and concerns about the “Real Lives” bill, which its supporters claim would give people with intellectual disabilities more choice in the services they receive.
The measure was passed by the state House last year, but died in the Senate. It has been reintroduced this year by its chief sponsor, Representative Tom Sannicandro.
Unfortunately, it doesn’t appear any substantive changes were made in this year’s version of the bill (HD 1379), which, once again, would give corporate service providers both unnecessary subsidy payments from the state and a disproportionate say in how the program is designed and run.
We also don’t believe the bill, as written, would accomplish its supporters’ intent, which is to “limit government intrusion into people’s lives and allow them to be more creative in how they design services to meet their needs.”
Aside from failing to adequately define many of the terms in the bill (as we previously pointed out about last year’s bill), the measure this year would appear to still leave it up to the Department of Developmental Services to make the key decisions about which services an individual would receive.
The bill would provide individuals with an “allocation of resources” to allow them to plan their own services and choose where they would live and who they would live with, according to the bill’s supporters. This planning process is referred to as “self-direction.” The Arc of Massachusetts, one of the bill’s key supporters, maintains that the legislation would “allow people with developmental disabilities…to use their money as they see fit…”
But the actual language of the bill states that “The Department (DDS) shall determine an individual’s prioritization for services and the amount allocated for an individual’s services…” (my emphasis). It sounds as though the individual’s amount of self-direction under the bill would be quite limited.
But our main reservation about this bill still centers around the potential benefits that the corporate providers would appear to get from it.
In a written response to our blog post last year, the Arc maintained that far from being the intended beneficiaries of the bill, the state-funded providers almost didn’t support the measure as originally drafted because it supposedly gave so much independent power to individuals and guardians.
Maybe, but as written now, the bill seems to be overly generous to the providers. For instance, it contains the same language as last year in establishing a “contingency fund” that would, among other things, “mitigate the impact to providers” if individuals were to choose to leave them for other providers.
This, in our view, amounts to a subsidy to the providers and has nothing to do with the stated purpose of the bill. The provision would essentially compensate providers for not providing services — sort of like paying farmers not to grow crops.
In addition, as was the case with last year’s version, the bill would create a “Self-Determination Advisory Board,” which would “evaluate and advise the Department on efforts to implement self-direction.” The legislation specifies that the Advisory Board would include providers, the Association of Developmental Disabilities Providers (the ADDP, which represents the providers), the Arc, “support brokers” (more about them in a minute), and a number of community-based advocacy organizations. No state employee unions or organizations such as ours with a different point of view would be included.
Also, this same provider-dominated Advisory Board would somehow “assist” DDS in developing the contingency fund, mentioned above, which would provide those subsidies to the providers.
And, if that weren’t enough, the contingency fund would be “comprised of 40% of the savings from the closure of Monson, Glavin and Templeton (developmental centers)….” In our view, this fund is being established on the backs of the residents who are being evicted from those facilities and being moved, in many cases, to provider-run residences.
No wonder the providers are supporting this legislation. But it doesn’t end there. Let’s go back to those support brokers, which are defined in the bill as persons who would “assist” individuals in developing their “person-centered plans” for services. A support broker would operate in conjunction with a “fiscal intermediary,” which the bill defines as “a financial management service…to assist an individual who self-directs in disbursing funds allocated to an individual.”
The employment of support brokers and fiscal intermediaries sounds like more business opportunities for corporate providers. In fact, one of the concerns we raised about it last year was that the support brokers sounded duplicative of the current function of state service coordinators. Service coordinators are state employees who already plan and monitor individualized services for people in the community system.
We remain concerned that the privatized support brokers and fiscal intermediaries established under the bill could take jobs away from service coordinators and other state employees who currently provide many of those same functions in carrying out DDS clients’ Individual Support Plans. This was reportedly a concern of the SEIU, a state employee union, which was engaged in negotiations over the bill last year. Unfortunately, it doesn’t appear the SEIU was very successful in those negotiations.
We understand, for instance, that there was a proposal or agreement at one point late last year to include explicit language in the bill about using service coordinators as support brokers, but this apparently didn’t happen. The current bill does state that “the support broker shall be made available through the Department or through a qualified private sector broker of the individual’s choice.” But that still doesn’t seem to us to guarantee any of this work for service coordinators or that DDS would necessarily even select state employees as support brokers.
Finally, the only substantive change from last year that we could find in the bill was a 90-day deadline to DDS to transfer someone who wants to leave their provider to “an available alternative.” Of course, this might hinge on whether the Department determines that an alternative is available.
We’re not saying this last provision isn’t worthwhile (although we disagree, of course, with subsidizing providers who lose any of those clients), but, in itself, we don’t think it justifies the bill. Why not make this 90-day provision a stand-alone bill?
In sum, it is disappointing to us that Representative Sannicandro, after talking to us and listening to our concerns last year, appears to have made little or no substantive changes to the bill. As such, we cannot support this bill as it stands so far. We would be happy to talk again with Rep. Sannicandro if he is open to our input on this measure.
We sent an email listing our continuing concerns this week to Rep. Sannicandro’s office. We’ll report on what we hear back.
Questions surround the governor’s budget plan for DDS
In a conference call with advocates last week, Department of Developmental Services Commissioner Elin Howe put what seems to be a highly optimistic spin on the governor’s FY 14 budget plan for her department.
Howe said that, “I think we’re entering into this (budget process) in better shape than in a considerable period of time.” Last spring, she similarly described the plan for the current-year DDS budget, as it emerged from the House Ways & Means Committee, as “the best budget the Department has had in five years.”
Governor Patrick’s $1.5 billion, FY 14 budget plan for DDS appears to be typical of his overall budget proposals for human services, but we aren’t ready to make too many rosy projections about it.
First, there’s the question whether the governor’s budget proposals are realistic, given that they depend on passage of his plan to raise taxes. And as was the case last year, Howe seems to be focusing on the brightest spots in a budget for her department that appears to have many dark spots as well.
Howe did begin the Wednesday call by noting that the governor’s proposed budget (H1) depends on legislative passage of his proposal to increase the income tax rate to 6.25 percent. The state’s current revenue estimate for the coming fiscal year “doesn’t support all of what we’re trying to do,” she said.
Howe said, though, that she had no figures on what might happen to the DDS line items for FY 14 if the Legislature were to balk at the governor’s tax plan, which seems a good possibility.
Secondly, while Howe noted that H1 calls for increasing a number of DDS line items, she acknowledged there are also a number of projected shortfalls and cuts in it. Among the line items in H1 with projected shortfalls are DDS Administration (which funds service coordinators), State-operated group homes, and Community-based Transportation programs.
Also, the community-based Adult Family Supports and Turning 22 accounts would be only level-funded under H1, while the Autism Division account would be cut by a small amount.
In addition, the state-run developmental center line item would be cut by $10.4 million, bringing the total amount cut from this account by the Patrick administration to nearly $80 million since FY 2009. As we’ve said many times before, we have yet to see how that cut in developmental center funding has provided much in the way of benefits for the average DDS client in the community system.
Moreover, Howe said there is no money in the H1 budget for the developmental center account for the continued operation of the Fernald Center in the coming fiscal year, meaning the Department will once again have to ask for supplemental funding for Fernald.
The following is a line-item breakdown for DDS, under H1 for FY14:
DDS Administration and service coordinators (5911-1003):
H1 would increase this line item by $1.7 million, to $64.7 million. However, Howe said this increase is the result of salary increases due to collective bargaining with the SEIU state employee union. Without an additional $500,000 in the account, 10 to 12 service coordinator jobs could be lost, she said.
Service coordinators have the critical task of making sure DDS clients are receiving the right services in the community system, and their caseloads are growing out of control. SEIU is asking for an additional $2.5 million in the administrative line item in order to restore 50 service coordinator jobs out of the 82 jobs lost since 2007.
Community Transportation (5911-2000):
H1 would increase this account by $537,000, to $13 million. However, Howe said this increase will still result in a shortfall in the transportation account of $500,000.
Community Residential (5920-2000):
H1 would increase this account by $71.7 million, to $860.3 million. Howe said some of this increased funding is the result of “Chapter 257,” a 2008 “global payment” initiative, which established pre-set rates for DDS residential service vendors. The Arc of Massachusetts says the Chapter 257 increase amounts to $55 million and is a “down-payment” on a total $175 million increase in funding that is expected to be given to the vendors.
State-operated Residential (5920-2010):
H1 would increase this account by $10.6 million, to $191.4 million. Howe noted that this increase is largely for the operation of new state-run group homes for residents from developmental centers marked for closure. Overall, she said, the increase in this account is $3.5 million less than what DDS requested, meaning the Department is once again projecting a shortfall in needed funding.
Community Day and Work (5920-2025):
H1 would increase the amount by $28.4 million, to $161.9 million, which is good news.
Adult Family Supports (5920-3000):
H1 would level-fund this account at $49.5 million, which is not good news.
Autism Division (5920-3010):
H1 would cut this account by $22,166, to $4.6 million. Bad news.
Turning 22 (5920-5000):
H1 would level-fund this account at $6 million. However, it would increase the annualized amounts for Turning 22 clients in the community residential, community day programs, and community transportation accounts. Mixed news.
Facilities (developmental centers) (5930-1000):
H1 would cut this account by $10.4 million, to $123 million. The Facilities account has been cut by nearly $80 million since FY 09.
Templeton Retained Revenue (5982-1000):
H1 would level-fund this account at $150,000
Non-DDS line items:
EOHHS Salary Reserve (1599-6901):
It does not appear that H1 contains any funding for the salary reserve for wage increases for direct-care workers employed by DDS vendors. In November, Patrick froze $20 million that had been placed in the fund for the current fiscal year.
Disabled Persons Protection Commission (1107-2501):
H1 would increase this account by $23,000, to $2.3 million. The effect, however, is level-funding of the agency, which has been level-funded since FY 2009. The DPPC is an independent state agency charged with investigating complaints of abuse and neglect of people with intellectual and other disabilities.
We’ll stay tuned of course to see what the House and Senate do with the governor’s budget for DDS. All in all, we don’t share the assessment that we’re entering into this budget process in great shape.
We are no doubt well into an era of reduced public services and of having to do more with less. Unfortunately, the administration doesn’t appear to have put much thought into how to accomplish that. It’s main initiative has been to close developmental centers, which hasn’t boosted funding to most community-based accounts.
DDS loosens IQ eligibility restrictions
Bowing to criticism from families and advocates, the Patrick administration has promulgated new, final regulations that will loosen its restrictive definition of “intellectual disability” in determining people’s eligibility for services.
It appears that under the new regulations, the Department of Developmental Services will no longer automatically deny services to anyone who scores above a 70 on an IQ test.
The new DDS regulations refer to the American Association on Intellectual and Developmental Disabilities (AAIDD), which defines intellectual disability as involving “significant limitations both in intellectual functioning and in adaptive behavior.” The AAIDD also states that a limitation in intellectual functioning can be indicated by an IQ score as high as 75.
Meanwhile, the state Legislature has enacted a bill (H. 4252), which would similarly adopt the AAIDD definition of intellectual disability in Massachusetts. The bill, filed by Representative Dan Winslow, was on the governor’s desk as of today, awaiting his signature. COFAR is asking people to call the governor’s office to urge that the governor sign the bill into law.
In 2006, DDS adopted regulations restricting eligibility for services to people scoring 70 or below on an IQ test. This led to the denial of benefits to an undetermined number of people and to a lawsuit filed on behalf of a woman who had had scored 71 on an IQ test at age 18, 69 at age 40, and 71 at age 42. The woman, who was subsequently denied services by DDS, was represented in the case by Thomas Frain, who is also president of COFAR.
In July, the Massachusetts Court of Appeals ruled in the case that the DDS’s 2006 regulations were invalid in defining intellectual disability without referring to a “clinical authority.”
DDS initially responded to the Appeals Court ruling by proposing emergency regulations in September that named the Department itself as a “clinical authority” in determining the presence of an intellectual disability. But that led to a chorus of objections from advocacy organizations, including COFAR, and family members of intellectually disabled people.
In the final regulations, DDS has withdrawn the designation of itself as a clinical authority. However, questions remain as to how much weight DDS will place on factors other than IQ in determining eligibility for services. The Disability Law Center, a federally funded public interest law firm, is also concerned that in basing eligibility for services solely on intellectual disability, Massachusetts is failing to serve many people with other types of developmental disabilities, including many people with autism.
That concern was reflected in the testimony of dozens of people at a DDS hearing in November that members of their families with severe disabilities were falling through the cracks in the system and failing to get services from the Department.
The final DDS regulations nevertheless appear to be a step in the right direction. It’s also important, as has been discussed here on BMG, that the language in the regulations be enshrined into law — hence the importance of Rep. Winslow’s bill.
The National Council on Disability can’t be serious
A key sign that ideology has taken over rational thinking in an organization is that the organization ups the ante on a given issue by taking progressively more radical positions on it.
At a certain point, the organization’s position reaches the level of the absurd, and that is what seems to have happened in the case of the National Council on Disability’s latest position in favor of deinstitutionalization of the intellectually disabled.
In a new online report and “Toolkit” titled “Deinstitutionalization: Unfinished Business,” the NCD, a federal agency that advises the president and congress on issues concerning the disabled, calls for the closure of all institutions for the intellectually disabled. Here’s the first sentence of the report:
The unfinished business of closing state-run institutions and other public and private institutional settings that have traditionally served people with intellectual disabilities and developmental disabilities is an important first step and should be a top public policy priority in every state where such institutions exist.
More about that in a moment. First, it’s important to note that the report introduces a new definition of an “institution”:
NCD believes that institutions can be not just large state-run institutions, but community-run small group homes as well; therefore NCD has defined “institution” as a facility of four or more people who did not choose to live together. (my emphasis)
This can’t be serious! A group home with four people in it is now an institution? The Social Security Act has up to now defined institutions as facilities housing 16 or more people.
What do the group home providers around the country, who have long opposed institutional care, think about the NCD’s new definition? Suddenly it’s the providers themselves who are apparently running little institutions, thinking all along that they were running “integrated” community-based homes.
It gets worse. The NCD report seems to focus most of its anti-institutional fire on Intermediate Care Facilities for the developmentally disabled (ICFs), which tend to serve the most profoundly disabled people and which must meet more stringent federal standards for care and treatment than do most group homes. While developmental centers such as the Fernald and Glavin centers in Massachusetts are ICFs, small, privately operated ICFs also exist in many states.
Apparently, the NCD doesn’t like the fact that the ICFs must meet standards of any sort. The NCD report characterizes ICFs as providing “a regulated program of services in a formally certified setting,” which means, according to the report, that residents in those facilities are “still living an institutional life.” Is NCD advocating unlicensed or uncertified facilities here?
Should all ICFs, and group homes with more than three residents in them, for that matter, be shut down, whether the residents are happy in them or not, because the residents are somehow living an institutional life? Apparently so.
How would that work? Would providers, for instance, be required to build a new generation of smaller residences that only house three people? Should families shoulder more of the burden of caring for extremely disabled children or siblings in order to avoid “institutionalizing” them in a residence with more than three people? The NCD report doesn’t discuss any of that, as far as I could see. And why should it? When you’re promoting an ideological viewpoint, why get into practical details?
It would seem the NCD’s goal is ultimately to put everyone out on the street, where they can fend for themselves; and once there, apparently no matter how disabled they are, they will somehow find “dignity, freedom, choice, and a sense of belonging that is not possible in an institutional environment.” Does anyone really believe that?
The NCD report adds that “deinstitutionalization is a civil rights issue,” and that a key strategy in closing institutions is to “focus on closure as a civil right.” But what about the civil rights of the vast majority of families of residents of developmental centers and other “institutions,” who don’t want those facilities to close?
The VOR, a national organization that advocates for a continuum of community and institutional care for those who need it, last week characterized the NCD report and Toolkit recommendations as “irresponsible, given the widespread, well-documented tragedies associated with under-funded and ill-prepared ‘community’ programs for individuals with profound needs. NCD has put its most fragile constituency at great risk of harm.”
The VOR further questioned whether the NCD has the legal authority to define institutions for the disabled differently than does the Social Security Act.
Meanwhile, here are some of the other strategies in the NCD’s Toolkit for closing those facilities:
- “Define the choice (over closure) as not ‘if,’ but ‘when’ and ‘how,'” and
- “Close the Front Door,” meaning push for the prevention of new admissions to developmental centers and presumably all other facilities with more than three people in them. The Toolkit states that a strategy of blocking new admissions tends to reduce opposition among families when the decision is made to close those facilities.
My favorite strategy in the Toolkit, however, is to “Build your case with faces, not facts.” The Toolkit states:
‘Faces not facts’ are important drivers of the discussion and the community’s support. The issue should have a “face”—personal stories, individual self-advocates, and parents who support the closure are all important influencers.
That sort of says it all that one of the main strategies advocated by the NCD is to downplay the importance of facts in the debate over closing ICFs.
To be fair, the NCD report does appear to recognize some of the serious problems that exist in the community system, including wages to direct-care workers that average only $10.14 an hour, compared with $15.53 for direct-care workers employed in residential institutions. The report also acknowledges that there are long waiting lists for care in the community system.
The NCD report even appears to recognize that community-based care can be as or more expensive than institutional care if the same costs and populations are compared. The report notes:
The average cost of care in the community is not necessarily comparable to the average cost for people in institutions owing to differences in severity of disability and the required services and supports.
And the report recognizes that concerns among families of institutional residents “might include access to regular health care and dental care, safety, and continuity and quality of care” in the community system.
That’s the real unfinished business in providing care to the intellectually and developmentally disabled among us, not closing vital institutions. As the VOR noted in their statement in response to the NCD report and Toolkit:
Closures (of institutions) opposed by the very people impacted have done nothing to address community capacity. Waiting lists continue to grow and community tragedies to occur.
Familes decry DDS’s ‘rigid cutoff’ in providing services
[Note: COFAR sent a notice on Wednesday to media outlets around the state about this public hearing scheduled for Thursday in Worcester. Not one newspaper or TV reporter showed up. This is a shame.]
Janet Suarez’s 22-year-old daughter Amanda cannot complete basic hygiene and is “unaware of physical boundaries,” putting her at risk of, among other things, sexual abuse.
Yet, DDS has disregarded the recommendations of clinical experts, Suarez said, and denied her daughter services. “She stays at home most days,” Suarez said. “She’s discouraged.”
Suarez was among a parade of people who testified at a public hearing at the Worcester Public Library on Thursday on state regulations governing eligibility for services from the Department of Developmental Services.
It was the same wrenching story again and again as the parents of developmentally disabled children talked about how the regulations have allowed DDS to deem their children ineligible for services because they had scored slightly above the cutoff score of 70 on IQ tests administered by the Department.
Speaker after speaker talked about how their now-adult children are overwhelmingly ill-equipped to cope with society. Most said their children have virtually no social skills or means of adapting to social norms. Many of those disabled individuals are unable to or can barely speak.
Eric Olson (at podium) testifies at a public hearing Thursday about the isolation his son has endured after being denied services by DDS.
The parents talked about their desperate need of services from DDS and about their sense of despair and isolation when those services were denied. In most cases, the family members stated that psychologists had found that their children had severe adaptive problems; yet, DDS had disregarded these findings in focusing solely on IQ scores.
COFAR has joined with the Disability Law Foundation, the Arc of Massachusetts and other organizations, including the national VOR, in urging DDS to change its regulations, which have given the Department the latitude to deny services to anyone scoring above a 70 on an IQ test.
DDS is also facing a court order stating that it must tie its determinations of intellectual disability to a “clinical authority,” and not base its service eligibility decisions solely on IQ measurements. But DDS emergency regulations, adopted in the wake of the court order, still appear to give the Department excessive discretion to rely on IQ scores, according to COFAR, the DLC, and the other advocacy groups, which provided testimony on those regulations on Thursday.
Eric Olson testified that his son Matthew has scored between 70 and 80 on IQ tests, making him ineligible under the DDS regulations for services; yet he cannot function without support. While his son received special education services, he attended work programs. In the past several years, “he’s been without significant work. He’s completely idle and isolated,” Olson said.
Donna Frank is the mother of two sons with autism, one of whom was rejected by DDS for services because his IQ was measured above 70. Ryan cannot cross a road safely and has had to be physically restrained many times while in school programs, Frank said. She said he has no concept of the difference between clean and dirty, and often comes home from school wearing other children’s clothes. Like many parents, she said she will have to quit her job to care for him when he turns 22, two years from now.
Also testifying was Gary Siperstein, Director of the Center for Social Development and Education at the University of Massachusetts Boston. Siperstein maintained that thousands of people with developmental disabilities go without services from DDS because “the regulations demonstrate a lack of flexibility that limits the number of people found to have intellectual disabilities.”
The emergency regulations, Siperstein continued, make it optional for the Department to even consider the standard error of measurement in an IQ test.
While DDS appears to have dropped language that would name the Department itself a “clinical authority” in determining the presence of intellectual disabilities, the regulation still inappropriately lists the Department as the “state intellectual disability authority,” according to Richard Glassman, litigation director with the Disability Law Center.
Glassman maintained that given the thousands of people in Massachusetts who have developmental disabilities and yet are not considered intellectually disabled by DDS, the Department needs to provide services on a broader basis. “We are raising a generation of young people who are spending their days in their bedrooms playing video games and watching TV,” Glassman said. “Their only real tie is to the Nintendo Corporation.”
Nirith and David Avraham testified on behalf of their son, who is 21 years old and autistic and was sitting with them in the hearing room. The young man would frequently rock back and forth in an agitated manner while his mother and father tried to calm him. Recent immigrants to this country, Nirith and David Avraham said that while their son is a very good artist, he can’t speak and has no social judgment. Yet, he was denied services after his IQ was measured at 72.
“It’s just me and and my husband to take care of him,” Nirith Avraham said. “”We have no network.”
Joan Durkin testified that her daughter, a single mother, is becoming desperate about what will happen to her own 21-year-old daughter, Annie, who has autism and obsessive-compulsive disorder, yet has been denied services because of an IQ measured at 71. Durkin said her granddaughter is non-verbal, has no problem-solving skills and needs 24-7 care. “Yet, DDS says she has no intellectual disability,” Durkin said.
DDS online licensure data remains out of date
We’ve raised a number of questions over the past year about the thoroughness and effectiveness of the state’s policies and procedures for inspecting and licensing group homes for people with intellectual disabilities. (See here and here.)
Unfortunately, we were unsuccessful in persuading the Legislature’s Children, Families, and Persons with Disabilities Committee to hold a hearing on the issues we raised.
But in response to our concerns, the Department of Developmental Services did indicate it was making efforts to update group home licensure reports on its website that we found were sometimes years out of date.
These licensure reports provide both information about the results of inspections of the vendors’ group homes and the type and duration of the license or licenses each vendor has been granted. The licenses are normally granted for two-year periods, so any such licensure reports that are more than two years old are, by definition, out of date.
In May of this year, DDS Commissioner Elin Howe stated in a letter to Representative Kay Khan, co-chair of the Children and Families Committee, that in addition to updating the licensure reports on the DDS website, licensure follow-up reports were being posted as of that time showing the outcomes of deficiency findings in the original reports.
As a result of these assurances from DDS, we went back and took another look this week at the online DDS licensure data for the same sample of 30 group home vendors that we first examined more than a year ago.
Based on the follow-up we’ve just done, it appears that DDS has taken some steps to update the licensure information on its website; however, much of the information still appears to remain out of date. Of the same 30 providers, licensure reports for 11 were still out of date as of this week, and one report (for the Merrimack Education Center) was no longer posted. That’s now 40 percent of the sample with out of date or missing reports.
Also, the promised follow-up licensure reports or updates were posted for only eight of the 30 vendors in the sample. (See table below with the latest results of our review of the DDS online licensure reports for our vendor sample.) No follow-up reports were posted for any of the 44 vendors listed on the website in the Metro Boston area.
In addition, the licensure reports posted on the DDS website for Behavioral Associates of Massachusetts (BAM) and the Center for Human Development (CHD) — two vendors that we selected for review — remained out of date this week, and no follow-up reports or updates were posted for either vendor. The BAM licensure report was dated April 2009 and the CHD report was dated November 2010.
We had reported in our April 2012 newsletter that DDS didn’t appear to have followed up on numerous deficiencies noted in the BAM and CHD licensure reports. As we noted in the newsletter article, a subsequent licensure report for BAM, dated May 2010, addressed some, but not all, of the licensing deficiencies identified in the previous April 2009 report.
Yet, that same April 2009 document was still the only licensure report for BAM that was posted on the DDS site as of this week. We had received the subsequent May 2010 licensure report from DDS in February of this year in response to a Public Records request. By the way, even that May 2010 report would have been out of date by now had it been posted on the DDS site.
Similarly, the November 2010 licensure report for CHD is now out of date because the two-year license for the vendor was listed in that report as valid through October 2012.
As we reported in the same April 2012 newsletter article, the November 2010 CHD report had cited the vendor for failing to report three incidents of abuse or neglect to the state Disabled Persons Protection Commission. In response to our same Public Records request, we received a follow-up report on CHD, dated December 2010, in February. Yet, as of this week, that December 2010 follow-up report had not been posted on the DDS site.
We sent an email message to DDS Commissioner Howe asking why it is taking so long to replace out-of-date licensure reports on the DDS website and why so few follow-up reports appear to have been posted. We cc’d Rep. Khan’s general counsel on the message. So far, we haven’t heard back from either Howe’s or Khan’s offices.
Results of COFAR review of DDS online group home licensure reports as of the week of November 5, 2012
| DDS Vendor | Date of licensure report posted online | Status of posted report | Follow-up reports or updates posted |
| Central-West Region | |||
| Aditus, Inc. | July 2011 | Current | None |
| Behaviorial Health Network, Inc. | October 2011 | Current | None |
| Center for Human Development, Inc. | November 2010 | Out of date | None |
| Evergreen Center, Inc. | May 2010 | Out of date | None |
| Independent Living for Adults with Special Needs, Inc. | September 2010 | Out of date | None |
| Mass Mentor | January 2012 | Current | None |
| Nonotuck Resource Associates, Inc. | April 2012 | Current | May 2012 |
| New England Center for Children, Inc. | March 2011 | Current | None |
| Seven Hills Foundation, Inc. | October 2011 | Current | November 2011 |
| Western Mass. Training Consortium, Inc. | May 2010 | Out of date | None |
| Northeast Region | |||
| American Training, Inc. | December 2009 | Out of date | November 2011 |
| Central Middlesex Arc, Inc. | September 2008 | Out of date | None |
| Fidelity House, Inc. | April 2012 | Current | July 2012 |
| Merrimack Education Center | No report posted | Unknown | August 2011 |
| Minuteman Arc for Human Services, Inc. | July 2008 | Out of date | None |
| Project Cope, Inc. | June 2011 | Current | August 2011 |
| Southeast Region | |||
| Arc of Cape Cod, Inc. | March 2011 | Current | None |
| Behavioral Associates of Mass., Inc. | April 2009 | Out of date | None |
| Cardinal Cushing Centers, Inc. | May 2012 | Current | None |
| Cerebral Palsy of Mass., Inc. | June 2011 | Current | September 2011 |
| Kennedy Donovan Center, Inc. | October 2010 | Out of date | November 2010, August 2011 |
| Road to Responsibility, Inc. | June 2008 | Out of date | None |
| Work, Inc. | November 2007 | Out of date | None |
| Metro Boston Region | |||
| Charles River Arc, Inc. | May 2011 | Current | None |
| Delta Projects, Inc. | August 2011 | Current | None |
| Justice Resource Institute, Inc. | August 2011 | Current | None |
| North Suffolk MHA, Inc. | April 2011 | Current | None |
| Till, Inc. | August 2011 | Current | None |
| Vinfen, Inc. | December 2010 | Out of date as of Nov. 8, 2012 | None |
| Walnut Street Center, Inc. | May 2012 | Current | None |
More questions about the Glavin land deal
Suppose a couple owned a house, and one day, the husband stated that they couldn’t afford to live there anymore and would have to move out. However, rather than putting the house up for sale, he said he planned to let a friend live in it for a dollar a year.
Might the wife not object and say maybe they could afford to stay there if they didn’t need the income from a sale of the property?
Isn’t this same sort of giveaway that the administration has just agreed to concerning 69 acres of state-owned land at the Glavin Regional Center, which has been targeted for closure as of next July?
As we previously noted here, the governor signed a bill into law in August to lease 69 acres of land at Glavin for $1 a year for the next 25 years to the Town of Shrewsbury. The land subject to the lease consists of 15 acres currently used as soccer fields and 54 acres of farmland.
The Worcester Telegram & Gazette reported in 2010 that the total amount of land at Glavin is “more than 120 acres” and had been assessed at $22.36 million. Thus, the land that has been effectively given to the town in this case could be worth as much as $12.9 million.
Many people seem to think we oppose the continued use of open space at Glavin for recreational and agricultural uses. That’s not the case. Our main question here is what happened to the deliberative process that the administration promised with regard to the disposition of the land?
We ask this question not because we want to see this land sold or used for any particular purpose. But like the wife in the house giveaway scenario above, we question the administration’s assertion that it can no longer afford to keep Glavin open and must evict its longtime residents. If closing Glavin is about saving money, why effectively give almost $13 million worth of land away without going through the promised reuse process?
In 2008, the administration announced it was closing the Glavin, Fernald, Monson, and Templeton developmental centers, contending there would be a fiscal savings in doing so. In making the closure announcement, the administration expressly stated that disposition of the land at those centers would be subject to a “collaborative” reuse-committee planning process.
Legislation was subsequently enacted into law to set up land reuse committees for the Fernald Center (Chapter 149 of the Acts of 2004, S. 402) and for the Monson and Templeton Centers (Chapter 59 of the Acts of 2009). However, a bill filed in January 2009 to establish a similar land reuse committee for the Glavin Center never got out of the Bonding Committee.
The Glavin land reuse bill, which had been filed by then state Representative Karyn Polito, had stated that the proposed reuse committee “will be mindful of the rights of current Glavin residents, and their need for adequate and appropriate housing, clinical services, and appropriate staffing…”
Why Polito’s bill died and was never refiled is a mystery to us.
Interestingly, in February 2010, the administration proposed to sell what appears to be the same parcels of land at Glavin that it is now prepared to lease to the town for $1 a year. Area legislators opposed the planned sale of the land.
What caused the about-face on the administration’s part from wanting to sell the Glavin land with no formal reuse process in place, to agreeing to effectively give the land away, with no formal reuse process in place?
We’ll continue to ask these questions, hoping for some answers.
State’s decision to lease Glavin land for $1 raises questions
For years we’ve heard from the administration that it’s necessary to close the Glavin Regional Center and three other developmental centers in Massachusetts because the centers have become too expensive to operate.
But if these closures are about saving money, why has the administration agreed to essentially give away 69 acres of state land at Glavin to the Town of Shrewsbury? In agreeing in August to lease the land to the town for $1 a year for the next 25 years, the state will forego potentially millions of dollars it would have gotten from the sale of that land.
Our main question really is this: Why has the administration reached this deal with the town outside of what would normally be a formal and deliberative process to determine the best options for reuse of the land? The 69 acres, which include soccer fields and farmland surrounding the Glavin Center, comprise at least 62 percent of the total Glavin campus.
For the past eight years, the state has been involved in a painstaking and often contentious reuse process with the City of Waltham over the 200 acres at the site of the Fernald Developmental Center, which has also been targeted for closure. That process has brought parties from all sides to the table, and has involved public hearings and a report by a planning consultant.
No such reuse process has yet occurred at Glavin, and yet a decision has already effectively been made about the disposition of a majority of the acreage at that site. It’s a decision, moreover, that is a great financial deal for the Town of Shrewsbury, but not for the state, which is supposedly so strapped for cash that it has had to evict what were hundreds of longtime residents of the developmental centers from their homes.
Here by the way, is what Governor Patrick had to say this past May about the reuse process at Fernald:
Everybody’s on it (the Fernald reuse process). All the interests, all the factions, and that’s how it should be. I know the city has expressed interest in buying it (a portion of the Fernald land). I don’t think the state’s in a position to give it away. But I think selling to the city, some or all of it, is certainly an option.
So, the state is not in a position to give away any of the Fernald land, yet it is in a position to give away the Glavin land? And why, in the case of Fernald, are all the interests at the table whereas, in the case of Glavin, the only interests at the table were the state and the town?
Both Glavin and Fernald have been targeted by the administration for closure, over the objections of most of the family members and guardians of the residents of those facilities. The administration has repeatedly claimed to the Legislature that it would save up to $40 million a year in closing the Fernald, Glavin, Monson, and Templeton developmental centers. Yet the administration and other opponents of the centers have repeatedly opposed an independent study of the cost of closing those facilities.
The $1 lease arrangement at Glavin stems from a home rule petition that was presented by Shrewsbury to the state Legislature in May. The lease involves both a 15-acre tract that has housed town soccer fields for many years and a 54-acre tract of farmland. The Legislature approved the lease and the governor signed the bill in August.
We’re not opposed to preserving the land at Glavin as farmland or as soccer fields. But we question why this lease arrangement for 69 acres of land was done outside of a formal disposition process for the land and why it was done in such a seeming hurry.
We’ve filed Public Records requests with the state for records concerning plans for the reuse of the Glavin property. We’d like to know what’s going on.
Rep. Haddad endorses independent study for Glavin Center
House Speaker Pro Tempore Patricia Haddad, who just spearheaded a successful effort to block the immediate closure of Taunton State Hospital, supports undertaking an independent study prior to the closure of the state-run Glavin Regional Center in Shrewsbury for persons with intellectual disabilities.
Speaking at a meeting Tuesday at the State House attended by Glavin family members, legislators and their staffs, and officials of the Department of Developmental Services, Haddad said the independent study should cover “the entire DMH (Department of Mental Health) and DDS system.”
“Someone has to be the first to say we’re not afraid to have an outside study done to tell us what’s wrong and what’s right,” Haddad said. She maintained that internal studies done by the administration that showed a savings in closing Glavin and other developmental centers in Massachusetts “are asking people to trust the results.”
The Tuesday meeting was organized by Republican Representative Matthew Beaton, whose Shrewsbury-based district is home to Glavin. In 2008, the Patrick administration targeted the Glavin, Fernald, Monson, and Templeton developmental centers for closure as of the end of the current fiscal year.
Fernald has remained open pending the outcome of appeals filed by the guardians of 14 remaining residents. The Monson center was officially closed last month.
During the Tuesday meeting, I pointed out on behalf of COFAR that the planned closures of the four developmental centers will leave only two locations in Massachusetts for federally regulated Intermediate Level Facility (ICF) care. Those remaining facilities are located in Danvers in the northeastern corner of the state, and Wrentham in southeastern Massachusetts. The administration has deferred a decision on whether to close the Danvers facility.
During the meeting, Will Dumont of Brookfield, the father of a resident of the centrally located Glavin Center, said it would be much more difficult to regularly visit his son if he were transferred hours away to Wrentham.
Sheila Bailey, another family member, said her brother had suffered abuse in a facility that he had lived in prior to coming to Glavin. “It was like a cloud was lifted when he got to Glavin,” Bailey said. “He finally had a life there.”
Beaton maintained that Al Bacotti, a former director of the Glavin Center, who has taken an active role in opposing its closure, maintained to him that in the next 10 to 15 years, the loss of the ICF-level care provided by facilities such as Glavin will force the state to rebuild them.
DDS Deputy Commissioner Larry Tummino said he did not dispute that the services at Glavin are excellent. He contended that “we can structure that clinical expertise in the community.” Tummino also maintained that guardians of some 31 residents at Glavin have agreed thus far to move those residents to other locations.
That latter claim from Tummino brought a sharp rebuke from Roland Charpentier, the president of the Glavin family association. Charpentier said the guardians who agreed to leave Glavin did so “because they were scared to death that Glavin is going to close.”
Haddad also was critical of the administration’s contention that the services provided by facilities such as Glavin and Taunton state can be replicated in the community system. “There are more horror stories than good stories in the private sector,” Haddad said. “You’re asking people to trust a system that has a lot of flaws,” she said to Tummino and a second DDS official who attended the Tuesday meeting.
“This is not something you can just say ‘it’s going to be okay,” Haddad added.
Haddad said she was nervous about what the independent study approved for Taunton State Hospital might conclude, but that she believes the outcome will be support for “a continuum of care” in the mental health system that would include Taunton State.
Speaking specifically about the plan to close Glavin, Haddad maintained that it is harmful to remove intellectually disabled people from their longtime homes. “People cling to the people and things that they know,” she said.
COFAR blog 