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…”
Autism Commission report has important recommendations, but funding remains a question
A state report released last week contains a number of important recommendations to begin to deal with the yawning gap in services, job opportunities, and housing for what may be the fastest growing group of developmentally disabled people in the state and the country.
The Governor’s Commission on Autism listed 13 priorities in addressing the problem, including expanding the number of people eligible for care from the Department of Developmental Services, expanding available community-based services, and expanding private insurance coverage available to families of autistic children and adults.
One apparent shortcoming of the report — and we’re not saying it would be easy to address that shortcoming — is that the report doesn’t say where the money would come from for all of these necessary expansions. It doesn’t appear that even Governor Patrick’s proposed tax increases to fund his Fiscal Year 2014 budget would come close to providing the needed funding for what the Commission notes needs to be done.
It’s somewhat ironic that even as the governor’s Commission calls for these service expansions, his proposed budget would cut funding to the state Autism Division, which manages a key children’s program that the Commission has proposed expanding.
The Massachusetts Budget and Policy Center’s budget browser shows an inflation-adjusted cut in the governor’s FY ’14 budget proposal of 2.6 percent from the amount appropriated for the current fiscal year for the Autism Division.
It’s also ironic, looking back on it, that then Secretary of Health and Human Services JudyAnn Bigby told The Boston Globe in 2008 that the planned closures of four state developmental centers for the intellectually disabled would free up some $45 million a year for community-based programs, including services for people with autism.
Since that time, close to $70 million in inflation-adjusted dollars has been cut from the developmental centers line item in the budget. But that money does not appear to have been used to boost most community-based line items. Funding for the Autism Division has, in fact, declined by about 5 percent since Fiscal Year 2009. (Again, these numbers are based on the MBPC’s budget browser.)
Nevertheless, we applaud the Commission for calling further attention to the current lack of adequate services for children and adults with autism, and for its endorsement of proposed legislation in the current session to expand DDS’s responsibility to care for people with autism who don’t currently fit within the Department’s eligibility guidelines (H. 78 and S. 908).
The report criticized inadequate staffing levels in community-based residential care for people with autism and low compensation of staff, which has led to high turnover. The report also noted that many adults with autism live with elderly parents and have “few options for future housing and support.” In addition, the report cited “an unknown backlog of people who would apply for aid if relevant programs existed.”
And the report called for hiring “highly trained service coordinators specially trained in autism.” The report didn’t discuss how this would be done, given that the state has been steadily eliminating service coordinator jobs in recent years.
Nevertheless, we’re glad the Commission put all these things on the record and showed, if nothing else, that they are of concern to state policymakers.
Why is a major state budget hearing being held during a major snowstorm?
I’m not sure if the members of the House and Senate Ways & Means Committees are aware of this, but it appears there is a major snowstorm going on this morning.
There’s probably a foot and a half of snow out here where I live in Hvad in Central Mass., and I understand there’s close to a foot of snow accumulation in Boston.
Yet, it appears the joint Ways and Means Committees are going ahead this morning with a major public hearing on the state budget. As the communications person for COFAR, I was planning on attending the hearing and presenting testimony on our FY 14 legislative priorities.
The hearing began at 10 a.m. The problem is, the snow has been coming down all morning; it’s now past 11, and I’ve spent the last hour digging my car out of my driveway. I’m taking a break to write this. I’m assuming there are others who were planning to attend this hearing who are in the same situation as I am.
As a result, a few questions have occurred to me: Why is a major public hearing on the state budget being held during a major snowstorm? Why wasn’t it rescheduled? Doesn’t this demonstrate a disregard for the public on the part of some of our key elected officials?
By the way, why hasn’t governor announced a travel ban in the state? If he did, would the Ways and Means Committees still hold their “public” hearing anyway?
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.
Update on the National Council on Disability’s anti-institutional bias
We wrote here before about the extreme ideological position of the National Council on Disability, which called last month for the closure of all residential facilities for persons with intellectual disabilities with more than three people living in them.
The NCD appears to be at it again, this time in the wake of the tragic shooting deaths of children and teachers in Newtown last month by a young man who may have had a mental illness or at least needed mental health treatment.
In a January 11 letter to Vice President Joe Biden, in Biden’s capacity as head of the president’s gun violence task force, Jonathan Young, chair of the NCD, appears to be more concerned about creating “an unnecessary expansion in institutionalization” than in ensuring that people who pose a danger to others get treatment or medication.
Young uses most of the letter to urge the vice president to avoid any measures that could unnecessarily institutionalize people, involuntarily commit them, or force treatment on them.
No one would disagree with Young’s contention in his letter that people who pose no risk of violence should not be subject to institutionalization or forced treatment. But Young says little about what the task force could or should do to protect everyone’s safety.
While COFAR’s mission is to advocate on behalf of people with intellectual disabilities, not specifically on behalf of people with mental illness, we are commenting on Young’s letter because much of the debate over deinstitutionalization of both groups of people has been similar. Certainly, Young and the NCD take the same view in favor of complete deinstitutionalization of both groups, and make the same flawed arguments about each.
In his letter to Biden, Young states that “institutional care has a long-standing history of poor outcomes and civil rights violation (sic) among persons with psychiatric disabilities.” At the same time, he bemoans a “profound shortage in community-based services” for people with mental illness.
There are a number of potential contradictions here. First, Young and many other institutional opponents gloss over the fact that many so-called community-based services are institutional in nature. The NCD, in fact, takes this viewpoint to an extreme. With regard to people with intellectual disabilities, the NCD has stated that even community-based group homes are institutional and should be closed down if they have more than three people living in them.
Young and the NCD can’t have it both ways. Young talks about a shortage of community-based services and yet he and the NCD want to dismantle much of the community-based infrastructure that exists for people with intellectual disabilities.
Secondly, while institutional care, whether of persons with psychiatric disabilities or intellectual disabilities, has certainly had its problems in the distant past, that care has come a long way. It’s deinstitutionalization, which has had the more checkered recent history and the poorer outcomes.
Here is an assessment in 2007 of the success or lack thereof of deinstitutionalization of the mentally ill, by the Kaiser Commission on Medicaid and the Uninsured.
The history of deinstitutionalization began with high hopes and by 2000, our understanding of how to do it had solidified. But it was too late for many. Looking back it is possible to see the mistakes, and a primary problem was that mental health policymakers overlooked the difficulty of finding resources to meet the needs of a marginalized group of people living in scattered sites in the community (my emphasis).
This marginalization of people living in scattered sites in the community is something we at COFAR have been saying for a long time with regard to people with intellectual disabilities. It’s distressing that the NCD, an independent federal agency that advises the president and Congress on disabilities issues, has apparently chosen to rewrite the real history of deinstitutionalization.
Young’s other major concern in his letter to Biden appears to be that safety-related measures under consideration by Biden’s task force, such as requiring colleges to refer students with perceived psychological disabilities for evaluation and institutionalization, might perpetuate a stigma or damaging stereotypes about mental illness. This concern on Young’s part appears to override his concern about the need such people might have for treatment.
We need to have a constructive discussion concerning the future of care for people with both mental illness and developmental disabilities. One way to begin is to stop the stereotypes and stigmas about institutional care.
DDS residential services vendors operating with expired licenses
An undetermined number of service vendors to the state Department of Developmental Services have operated group homes and provided other services to clients of the Department despite having expired state licenses, according to a survey done by COFAR.
The survey identified at least three vendors — the Center for Human Development (CHD), Vinfen, and Independent Living for Adults with Special Needs — that were operating with expired two-year licenses as of mid-December.
The situation appears to be the result of an inability of DDS to approve the vendors’ license renewal applications within a prescribed time frame of 60 to 120 days, possibly due to a lack of adequate staffing in the Department.
DDS regulations allow vendors to continue to operate with expired licenses as long as those vendors submit license renewal applications more than 60 days prior to the license expiration dates. That was the case with the three vendors identified by COFAR, according to DDS.
The DDS licensure system for vendors is viewed as a critical means of ensuring that the vendors provide quality care and safe environments for thousands of people with developmental disabilities. According to an online DDS Licensure Manual, the licensure process he is based on the ability of a vendor to meet several “essential safeguards” that concern personal safety, health, rights, a competent workforce, and individual care plans.
While the regulations appear to provide the Department with a technical reason for declaring expired licenses valid, it is concerning that DDS is apparently unable to ensure that license approvals are not more than two years old for all vendors.
According to DDS, Independent Living submitted its license renewal application on April 4, 2012. As of mid-December, some eight months later, the Department had apparently not yet approved the application or issued a new license to the vendor to continue to operate. The vendor’s license expired in August 2012.
Similarly, CHD submitted its license renewal application in July 2012 and Vinfen submitted its application in August 2012, according to DDS, and yet neither of those vendors had apparently been issued new licenses to operate as of mid-December. CHD’s license expired in October, and two licenses held by Vinfen expired in November.
COFAR emailed DDS Commissioner Elin Howe on January 2, seeking an explanation as to why it was taking so long in each of these cases for DDS to approve the licensure applications and issue new licenses to the three vendors. A revision of the DDS licensing process in 2009 envisioned, among other things, improving the “efficiency” of the process and shortening the time it takes to survey a vendor’s group homes from a maximum of 14 days down to 5 days, according to the DDS Licensure Manual.
COFAR last surveyed online DDS licensure reports in November for some 30 DDS vendors and found that 11 of the reports appeared to be out of date on the DDS website because they listed licenses granted to the vendors that appeared to have expired. Among those reports were the following:
- A licensure report for CHD, dated November 2010, which listed an expiration date for the vendor’s license for residential and individual home supports of October 28, 2012. As of January 7, 2013, the November 2010 licensure report was still the only posted document for this vendor on the DDS site.
- A licensure report for Vinfen, dated December 2010, which listed an expiration date of November 8, 2012 for each of the vendor’s licenses for residential and individual home supports and for employment and day supports. As of January 7, 2013, a follow-up report, dated March 2011, was posted on the DDS site for Vinfen, but the document did not indicate any change in the license expiration date.
- A licensure report for Independent Living, dated September 2010, which stated that the vendor’s license for residential and individual home supports had been “deferred” as of that date because six “critical indicators” had not been met during an August 2010 licensure survey. As of January 7, 2013, the September 2010 licensure report was still the only posted document for this vendor on the DDS site.
In letter to COFAR, dated December 19, 2012, Robert Smith, a DDS assistant general counsel, stated that the licenses for the three vendors were considered valid by the Department because the license renewal applications for each vendor had been submitted more than 60 days prior to the license expiration dates.
Smith said that while the license for Independent Living had been temporarily deferred in 2010, the vendor corrected its licensure deficiencies in October of that year and was subsequently issued a two-year license that expired on August 26, 2012. Because the vendor had submitted its license renewal application in April 2012, more than 60 days prior to the expiration of the license, that license, like those for CHD and Vinfen, was considered valid by the Department, Smith said.
In an earlier December 5, 2012 letter to COFAR, Smith stated that the Department was “actively correcting delays in posting current reports on its website.”
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.
COFAR blog 