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Our proposal to Senate Ways and Means to redirect some DDS funding in Fiscal Year 2015
Governor Patrick and the state House of Representatives have specified funding for the Department of Developmental Services budget for the coming fiscal year that is way out of balance.
Budget legislation proposed by the governor and approved so far by the House would raise the level of funding to DDS corporate residential providers to more than $1 billion. That’s an increase to the providers of more than $140 million, or more than 16 percent, over current-year spending in FY 2015 dollars. At the same time, both the governor’s and the House budgets would either cut or provide much more meager increases for most other DDS line items.
Here’s a proposal to the Senate Ways and Means Committee to restore some balance to DDS funding. As noted below, we are suggesting to the Ways and Means Committee, which is now considering the entire state budget, that at least part of the proposed increase in the Community Residential (corporate provider) line item be redirected to other DDS line items.
We have calculated that if the governor’s proposed increase in the Community Residential line item were reduced by just 2.1 percent – to a 14.7 percent increase – the Legislature could re-direct close to $18 million of the governor’s $145 million increase to the state-operated group homes, DDS service coordinators, the Autism Division, Turning 22 program, Respite and Family Supports, and the remaining developmental centers in the state.
COFAR’s proposed changes in DDS line items for FY ‘15
| Suggested decreases from gov’s FY ’15 budget numbers | Percent inc. from FY ’14 | Suggested increases from gov’s FY ’15 budget numbers | Percent inc./dec. from FY ’14 | ||
| Community res. (providers) | ($18,142,085) | 14.7% | State-operated group homes | $6,755,404 | 10.0% |
| Adm. (service coordinators) | $2,714,544 | 5.0% | |||
| Facilities | $6,254,933 | -7.7% | |||
| Autism Div. | $446,207 | 6.0% | |||
| Turning 22 | $460,003 | 5.0% | |||
| Respite Family | $1,136,399 | 5.0% | |||
| Total | $17,767,489 | ||||
The following are the details of our proposal:
Community Residential: FY ’15 budget line item 5920-2000: 14.7 percent increase
Both the governor and the House have proposed a disproportionately large increase in this line item for the coming fiscal year. We would urge the Senate Ways and Means Committee to propose a lower increase.
The governor proposed a $145 million, or 16.8 percent, increase in Community Residential funding in FY ’15 dollars. The proposed increase would bring the line item to $1.009 billion. This would amount to a 63.7 percent increase in funding for the providers since FY ’07.
On April 30, the House approved a slightly lower increase in the line item to $1.006 billion – still a 16.4 percent increase from the current year in FY ’15 dollars.
If the governor’s proposed increase was reduced by just 2.1 percent in this line item, it would save $18.14 million in FY ’15 dollars, which could be directed toward other line items that have been proposed for little or no increase in funding, or else are slated to be drastically cut, such as the facilities line item.
We would note that our proposal would still allow for a 14.7 percent increase in funding for the Community Residential line item, which would bring the line item to $990.7 million in FY ’15 dollars in the coming fiscal year. This reduction in the line item increase to 14.7 percent would allow for the following increases, or reductions in proposed cuts, in the following line items:
State-operated Residential 5920-2010: 10 percent increase
Both the House and the governor have specified a $12.6 million, or 6.5 percent, increase in funding for DDS state-operated group homes, to $206.3 million. We would urge the SW&M Committee to increase funding for this line item by an additional 3.5 percent, which would add $6.7 million to the amount proposed by the governor in this line item.
DDS data show that close to 42 percent of the 372 individuals moved out of developmental centers in the state since 2008 were placed in state-operated group homes. Just 13 percent of those individuals went to provider-run group homes. (We’ll say more about this in an upcoming post.)
Since 2008, 38 new state-operated group homes have been built in the state, but 3 have been closed or converted to provider-operated homes. DDS has projected that it will build an additional 6 state-operated group homes, but will close or convert 5 state-operated facilities to provider residences. Meanwhile, 157 new provider-operated group homes have been built since 2008.
Additional funding is needed for the state-operated group home system to preserve it as a choice for people waiting for residential care in the DDS system.
State facilities 5930-1000: Reduction from a 12.7 percent cut to a 7.7 percent cut
The governor proposed a $15.8 million, or 12.7 percent, cut in the developmental centers line item for FY ’15, to $109.2 million. The House approved even a deeper cut of 13.5 percent. Since FY ’07, the line item will have been cut by close to 47 percent if the governor’s FY ’15 budget is adopted.
The administration is dismantling the developmental centers; however, since 2008, more than 45 percent of the individuals moved out of the centers have been sent to either the remaining Wrentham or Hogan developmental centers. Some funding should be restored to this account to ensure that current conditions in the remaining centers are maintained.
DDS administration 5911-1003: 5 percent increase
The governor proposed just a $551,000 increase in the DDS administrative account in FY ’15 dollars, to $65.9 million, which is less than 1 percent in inflation-adjusted numbers. The House approved even a smaller increase – just 0.43 percent.
The DDS administrative account pays for service coordinators, who are being phased out of their jobs as the administration and Legislature look to award service coordination work to corporate providers. Providing just a 5 percent increase in this line item would add $2.7 million to the amount proposed by the governor.
Autism Division 5920-3010: 6 percent increase
Both the governor and the House specified virtually no increase in the Autism Division line item, which amounts to a cut of 1.8 percent in FY ’15 dollars. Given the growing public awareness of the prevalence of people with autism in the population, it is troubling that neither the administration nor the Legislature appear to have placed a priority on funding this line item.
COFAR would suggest providing for a 6 percent increase in the Autism Division line item for FY ‘15, which would add $446,207 to the governor’s proposed amount.
Respite family supports 5920-3000: 5 percent increase
Both governor and the House specified a 2.9 percent increase in this line item, which would bring it to $54.9 million in FY ’15. The line item has been constantly under-funded and would be 12 percent lower in FY ’15 dollars than it was in FY ’07 if the governor’s budget is approved.
COFAR is suggesting a 5 percent increase in funding for this line item, which would add $1.14 million to the amount proposed by the governor and the House.
Turning 22 5920-5000: 5 percent increase
This line item has also been constantly under-funded for many years. Both the governor and the House specified no increase in funding for the line item for FY ’15, which amounts to a 1.9 percent cut in funding in FY ’15 dollars.
A 5 percent increase in funding for this line item would add $460,000 to the amount specified in the governor’s and the House budgets.
Our proposal emphasizes family choice
We think this proposal to redirect some DDS funding is consistent with our long-standing position that individuals and their families — and not the providers — should have the primary say in the type of care and services they receive. Families have consistently indicated, for instance, that they prefer state care to care provided by corporate providers. Our proposal would redirect millions of dollars to neglected or underfunded state-operated programs and services.
For that reason, we are not supporting the providers’ call for an additional $5.5 million increase in the DDS community day and work account (5920-2025) because the providers want the additional money to be used to transfer intellectually disabled persons from sheltered workshops to day programs that they run. COFAR is supporting the preservation of sheltered workshops in the state for those who choose to remain in them.
Finally, given the lack of adequate oversight of the DDS contracting system, our proposal to redirect DDS funding would at least reduce some of the increase that may well go straight into the pockets of the corporate executives of the provider companies. We hope the Ways and Means Committee will consider our proposal before releasing their version of the budget this week.
It’s time to stop playing budget games with the ‘Real Lives’ bill
Once again, proponents of the ‘Real Lives’ bill have attempted an end-run around the normal legislative process by inserting the measure into the state budget bill in the House.
As we’ve pointed out many times, while the Real Lives bill is intended to provide intellectually disabled persons with choice and “self-determination” in obtaining services from the Department of Developmental Services, it has been drafted with a number of provisions that have turned it into a vehicle to benefit DDS corporate providers.
Using the same tactic he employed last year, Rep. Tom Sannicandro, the perennial sponsor of the proposed legislation, inserted the measure into the Fiscal Year 2015 budget bill, which was debated last week in the House. Only this time, Sannicandro and the providers appear to have ignored a thoughtful re-draft of the bill by state Senator Michael Barrett that is reportedly due to be approved by the Children, Families, and Persons with Disabilities Committee any day now. In his redraft, Barrett, who is Senate chair of the Children and Families Committee, removed the overtly provider-friendly provisions from Sannicandro’s version.
Sannicandro seems to be continuing to file his version of the bill at the behest of the Association of Developmental Disabilities Providers (ADDP) and the Arc of Massachusetts, which don’t appear to like Barrett’s redraft. That appears to be because Barrett’s redraft includes a provision intended to prevent those organizations from benefiting financially from the legislation.
We’ve blogged many times about what we see as serious conflicts of interest posed by Sannicandro’s version of the bill, including the fact that it would put the Arc and ADDP on an advisory board created to help DDS develop the self-determination program, and would establish a “contingency fund” that would compensate providers financially when residential clients leave them for other providers (effectively paying them for not providing services). Barrett’s redraft not only removes the contingency fund as well as all references to the Arc and the ADDP from the bill, it states that more than 50 percent of the advisory board must be made up of individuals who are financially independent of any DDS provider.
Yet, the vote in favor of Sannicandro’s amendment in the House last Wednesday was unanimous. We can only hope that most of the 150 House members who voted for Sannicandro’s budget amendment were not aware of Sen. Barrett’s redraft. But certainly Sannicandro has known about Barrett’s redrafted version. After all, he was invited by Barrett’s staff earlier this year — just as we, the Arc and ADDP were — to comment on the redraft.
I talked on Tuesday to a member of Sannicandro’s legislative staff, who said he didn’t know what Sannicandro’s position is on Barrett’s redraft. The staff member, however, did maintain that passage of Sannicandro’s version of the bill as part of the budget would not necessarily “cut off” passage of Barrett’s version of the bill. But I didn’t receive a clear answer from the staff member as to why Sannicandro would file his version of the bill as a budget amendment if he is not opposed to Barrett’s version.
We hope Sannicandro’s version of the bill will not appear in the Senate budget as it did in the House. We don’t think any version of this complex bill should be decided as part of the budget debate. A staff member in Barrett’s office said this week that the Senate leadership is aware “we’ve (Barrett and his staff) worked hard on our redraft.” The staff member said they were not aware of anyone planning to file an amendment to the Senate budget similar to Sannicandro’s.
We have a number of concerns even with Barrett’s version of the Real Lives bill. But it’s a lot better than Sannicandro’s version, and it is, moreover, moving through the appropriate legislative process.
Autism definition and commission bill raises some concerns
Process does matter, and we have a number of concerns about what happened to the process in the surprise adoption by the state House of Representatives last week of a major piece of legislation affecting people with autism in Massachusetts.
The bill (H. 4047), which was passed by the House on April 16, ties together a number of separate pieces of legislation, including a bill that would expand eligibility for state services both to persons with autism and a condition called Prader-Willi Syndrome. The combined bill also includes language from a separate bill that would establish a permanent state autism commission in Massachusetts (H. 3777).
We acknowledge the good intentions of the leadership in the House in trying to extend state services potentially to thousands of people with autism who currently do not qualify for care from the Department of Developmental Services because they don’t meet the Department’s definition of intellectual disability. We also have no objection to the establishment of a permanent autism commission.
But the omnibus bill, as it is being referred to, raises a number of concerns:
1. H. 4047 adopts a restricted definition of developmental disability that, as we have previously noted, leaves out people with many types of disabilities other than autism and Prader-Willi Syndrome, which is a condition often associated with autism. That restricted definition was a compromise, negotiated between DDS and a small group of legislators and advocates. It has not had a public hearing and may violate both the federal Rehabilitation Act and the Massachusetts Constitution, both of which prohibit discrimination solely on the basis of disability. Among the organizations withholding support for this restricted definition, in addition to COFAR, is the Disability Law Center.
2. The bill as a whole does not appear to have been considered by the Children, Families, and Persons with Disabilities Committee, which is the main committee of cognizance in the Legislature over DDS-related issues.
3. The original legislation establishing the autism commission (H. 3777), which was incorporated into H. 4047, does not appear to have been considered by the Children, Families and Persons with Disabilities Committee either. That previous bill appears to have gone from the State Administration Committee to the House Ways and Means Committee before being incorporated into H. 4047, without ever coming before the Children and Families Committee.
Our main concern about H. 4047 is that, as currently written, it would appear to violate the federal Rehabilitation Act (29 U.S.C., Section 794) and Article 114 of the Massachusetts Constitution. The bill specifies DDS services for certain developmental disabilities but not others, such as cerebral palsy, epilepsy, spina bifida, and traumatic brain injury, and cognitive impairments such as Williams Syndrome. This, on its face, would appear to be discriminatory and could potentially invite lawsuits.
H. 4047 defines “developmental disability” as a “severe, chronic disability of an individual 5 years of age or older that is attributable to mental or physical impairments resulting from intellectual disability, autism or Prader-Willi Syndrome.” Prader-Willi Syndrome is a condition often associated with autism.
State law currently restricts eligibility for services from DDS to persons having an “intellectual disability” as measured by an IQ score of approximately 70 or below. Intellectual disabilities are considered a subset of developmental disabilities.
Currently, thousands of people in the state are developmentally disabled in that they are unable to care for themselves or otherwise function adequately in society; yet, many of them are ineligible for services from the state because they do not have an intellectual disability. However, even though it excludes thousands of people from DDS eligibility, the current eligibility standard is, in itself, not necessarily a violation of the Rehabilitation Act or the state Constitution. That’s because it is based on an IQ threshold above which an individual is not considered by DDS to be intellectually disabled.
Ironically, in expanding the DDS eligibility statute to include people with autism and Prader-Willi Syndrome, the state may be opening itself up to a lawsuit because the distinction between disabled and non-disabled will no longer be based on a clear standard of measurement but rather on what appears to be an arbitrary list of developmental conditions. If you happen to have the right condition, i.e., autism or Prader-Willi Syndrome, you will get DDS services; but if you happen to have cerebral palsy or Williams Syndrome, you won’t get them.
Under a previous eligibility expansion bill that both COFAR and the DLC supported, developmental disability was defined as a condition “attributable to a mental or physical impairment,” which results in “substantial functional limitations” in three or more “major life activities.” Those activities included self-care, receptive and expressive language, learning, mobility, self-direction, a capacity for independent living, and economic self-sufficiency. Like the current DDS eligibility standard, that previous definition of developmental disability attempted to distinguish between disabled and non-disabled persons. It did not arbitrarily select some disabilities for inclusion and exclude others.
We understand the DDS’s concern that if eligibility for services is opened up to all persons with developmental disabilities, the state may be unable to afford the resulting costs of care. But adopting a seemingly arbitrary list of those who will be eligible and those who will therefore be excluded doesn’t seem to us to be the right solution.
Other states have found acceptable solutions to this problem, and we think Massachusetts should seek to join them. In the meantime, we hope the Senate will send H. 4047 back to the Children and Families Committee, which can at least subject all of the provisions in the proposed legislation to a public hearing.
House leadership rejects politically correct view on sheltered workshops
In a welcome counter to some political-correctness-run-amuck in the Patrick administration, the leadership of the state House of Representatives is reportedly solidly behind efforts to preserve vital sheltered workshops in Massachusetts for people with intellectual and developmental disabilities.
As we reported last week, Rep. Brian Dempsey, chair of the House Ways and Means Committee, placed language in the Fiscal Year 2015 budget that would block the Patrick administration’s plans to close all remaining workshops in the state by June 2015.
As a result, the Department of Developmental Services prevailed on a House member to file a budget amendment (No. 282), which would remove Dempsey’s protective language from the bill. Corporate providers to DDS, meanwhile, began blaming COFAR for having thrown a monkey wrench into their plan to transfer participants from the workshops to their own provider-run daycare programs.
But we understand that the plans in the House are to quietly quash Amendment 282 during the budget debate, which starts on April 28. The scene will next shift to the Senate, where we hope the Senate Ways and Means Committee will place similar protective language for the workshops in its version of the budget.
Workshop proponents have spent the past week calling members of the House to urge their support for Dempsey’s line item language, which states that DDS “shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”
As we’ve noted, DDS and the providers maintain that the sheltered workshops “segregate” developmentally disabled people by placing them together in group settings. This allegedly prevents them from reaching their full potential because they are not being placed alongside non-disabled peers in mainstream work sites. Citing that reasoning, the administration blocked all new referrals to the workshops as of this past January, and announced plans to close all remaining workshops in the state as of June of 2015.
While the administration’s reach-their-potential argument may sound reasonable in theory, it has no relationship to the experience of real people such as Kim Ryan and Gail Wayne, both of whom have been participants in a sheltered workshop in Newburyport for the past 20 years. Kim’s parents, William and Janet, said that Kim has tried seven different times to work in mainstream, community-based jobs, but has experienced either “social or emotional failures with each of these attempts.”
Martha Smith, Gail Wayne’s mother, said Gail has also worked in many community-based jobs, such as sorting mail in the Newburyport City Hall and working in the municipal library; but each of those jobs disappeared over the years for different reasons. Gail currently does volunteer work in a gift shop in Topsfield, but it is in the sheltered workshop that she has been able to work on a permanent basis and to earn a paycheck. “Her first love is the workshop,” Martha Smith said. “She feels completely secure there and wants to be there. She wants it to continue.”
Martha’s husband, Reid Smith, maintains that there are few full-time jobs available in the mainstream workforce for developmentally disabled persons such as Gail and Kim. Reid Smith adds that the term “sheltered” may be a misnomer. “It’s a workplace with a little more supervision,” he says. “I always urge people who happen to oppose them t go and see them.”
As part of its argument for closing the workshops, the administration has cited federal lawsuits in Oregon and Rhode Island, which are based on the segregated workplace argument. However, as we’ve noted, those settlements did not require the closures of all sheltered workshops as the Patrick administration is planning in Massachusetts.
It’s still worth contacting your state representative and Rep. Dempsey’s office to voice your support for these workshops, and to thank Rep. Dempsey for his support. The House Ways and Means Committee number is (617) 722-2990, and Rep. Dempsey can be contacted at Brian.Dempsey@mahouse.gov. You can find your own legislators at: http://www.wheredoivotema.com.
Ways and Means budget language would protect sheltered workshops
The House Ways and Means Committee has been listening to proponents of sheltered workshops for people with developmental disabilities, and has placed language in the Fiscal Year 2015 budget that would block the Patrick administration’s plans to close all remaining workshops in the state by June 2015.
As a result, corporate providers to The Department of Developmental Services are blaming COFAR for having thrown a monkey wrench into their plan to transfer participants from the workshops to their own provider-run daycare programs.
In an email sent to its members on Thursday, the Massachusetts Association of Developmental Disabilities Providers (ADDP) maintained that COFAR is “the only organized group that has objected” to the plan to close the workshops, and described COFAR as having “a small membership,” and as having been “formed to protest the closure of state institutions.” It’s always a sign that the leadership at the ADDP is getting flustered over an issue when they single out COFAR and inaccurately portray our mission.
In fact, COFAR has joined with a coalition of sheltered workshop proponents and providers in an effort to keep these popular programs operating in the state. It’s an uphill battle. Backed by the ADDP and the Arc of Massachusetts, the administration has already prohibited all new referrals to the workshops as of this past January as part of an “Employment First” initiative.
[UPDATE: As of Friday afternoon, several House members had signed on as co-sponsors to an amendment (Amendment No. 282) to the budget to remove the protective language for the sheltered workshops. We fail to understand how anyone could support the removal of these excellent programs with paying jobs for intellectually disabled people. Please ask your legislator and Rep. Dempsey to reject Amendment 282.]
As we’ve noted, the administration, the federal government, and their friends in the corporate provider industry argue that sheltered workshops are politically incorrect because they allegedly “segregate” disabled people from non-disabled peers by placing them in congregate-care settings instead of in mainstream employment, and they often pay below-minimum wages. But many families of the participants maintain that the programs provide them with useful skills and meaningful activities, and that there is nothing about them that segregates or isolates people.
Moreover, the workshop proponents argue, the administration’s contention that mainstream employment opportunities exist for all or even a significant number of developmentally disabled persons is largely wishful thinking. It’s hard for anyone to get a job these days. If sheltered workshops employing hundreds of developmentally disabled persons throughout the state are closed, most of those participants will end up in DDS daycare programs, many of which offer few skill-based activities, much less any sort of wages for performing them.
Nationally, an online petition to save sheltered workshops around the country garnered more than 3,000 signatures.
In its version of the FY ’15 budget released this week, the Massachusetts House Ways and Means Committee inserted language into Department of Developmental Services Line item (5920-2025), stating that DDS “shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”
The language, however, appears to be contradicted by Outside Section 102, which the Ways and Means Committee also placed in its budget plan, which requires the DDS to submit a report to legislative committees each year “until the full implementation of the employment first initiative.” The section also refers to “the transition from sheltered workshops to programs under the employment first initiative.” Nevertheless, the ADDP email this week voiced concern that the House Ways and Means line item language would “prevent the expected June 2015 closure of sheltered workshops,”and stated that the ADDP, the Arc, and DDS “will seek to have this language withdrawn.”
Among the reasons given by the ADDP for closing the workshops in Massachusetts was the possibility of a federal lawsuit against the state by the “litigious prone” U.S. Department of Justice and the federal Disability Law Center of Massachusetts. We would note, though, that while the DOJ has taken legal action in Rhode Island and Oregon alleging that sheltered workshops segregate participants in those states, even the DOJ hasn’t called for closing all of those shelters down. In a January 2014 letter to the Rhode Island attorney general, the DOJ Civil Rights Division left room for maintaining sheltered workshops for those participants who chose to stay in them (see the final paragraph before the conclusion on page 32.)
No such choice will be available for Massachusetts residents if the Patrick administration, the Arc, and the ADDP are allowed to carry out their plan to close down all sheltered workshops in this state.
To contact the House Ways and Means Committee, call (617) 722-2990. The chair of the Committee is Representative Brian Dempsey, who can be contacted at Brian.Dempsey@mahouse.gov. You can find your own legislators at: http://www.wheredoivotema.com.
Questions surround phase-out of sheltered workshops for the developmentally disabled
The Patrick administration’s decision to close group worksites known as sheltered workshops for persons with developmental disabilities as of June 2015 is causing anxiety to many families and confusion apparently even to many service providers.
As we previously reported, these programs, which provide assembly and other jobs in group settings, are considered politically incorrect by the state and federal governments because they allegedly “segregate” disabled from non-disabled people and pay some of them below minimum wages. But as we’ve noted, many family members of workshop participants maintain that sheltered workshop programs provide their loved ones with important skills and meaningful activities; and they say they are not prevented from regular interaction with non-disabled people.
The Patrick administration, however, is moving ahead quickly with the shutdown of sheltered workshops. Backed by the Arc of Massachusetts and the Association of Developmental Disabilities Providers, Governor Patrick has proposed an additional $5.6 million in the coming fiscal year under the Department of Developmental Services Day and Work program line item (5920-2025) in the state budget, to transfer people from sheltered workshops to DDS day programs. The Arc and ADDP are asking for an additional $5.5 million on top of that.
Families of sheltered workshop participants are being told by DDS, the Arc, and the ADDP that their loved ones will remain in community day programs while DDS provides them with job coaching and other employable skills, and looks for opportunities to place them in the mainstream workforce. The current sheltered workshop programs, they say, will be replaced by “supported” or “integrated employment” programs in which developmentally disabled people will work alongside non-disabled people in actual businesses and will earn at least the minimum wage.
But there is uncertainty over how many mainstream or “integrated” jobs really exist for most people with developmental disabilities. And while DDS maintains that current sheltered workshop providers will stay in operation, we and others have many questions for which answers are hard to come by:
- Will the additional funding being sought by the governor, the Arc, and the ADDP be used to provide meaningful work activities and skills to disabled persons after their sheltered workshop programs have been closed? Or will the transfers of workshop participants to day programs simply result in the warehousing of people who were previously engaged in paid work?
- Will providers that switch from sheltered workshops to supported employment programs have to dismiss a certain number of developmentally disabled participants from paying jobs and replace them with non-disabled individuals so that the new programs would then be fully “integrated,” i.e., not have too many disabled people or too few non-disabled people working in them?
- What is the acceptable number of disabled people in one setting before it is considered a segregated workplace?
- What is the minimum required number of non-disabled persons in a given workplace, which employs disabled people?
There seems to be little clear guidance on these issues from DDS or the federal government, which is phasing out sheltered workshops on a national scale. Thus far, the federal Centers for Medicare and Medicaid Services is not putting too much specificity into its rules and regulations on the matter. In an informational bulletin issued in 2011, the CMS stated that supported employment programs “must be provided in a manner that promotes integration into the workplace and interaction between participants and people without disabilities in those workplaces.”
But what does integration into the workplace really mean? What constitutes interaction between participants and people without disabilities? How many people without disabilities must be present in order to satisfy the CMS and DDS?
Similar questions surround the CMS’s requirement that supported employment programs pay disabled individuals “competitive wages,” which is defined by the CMS informational bulletin as “at or above the minimum wage, but not less than the customary wage and level of benefits paid by the employer for the same or similar work performed by individuals without disabilities.”
Is it fair to require that a disabled individual who lives in a state-supported residential setting be paid the same as a non-disabled person who must pay rent or a mortgage? Related to this is what impact will receiving a minimum or prevailing wage have on a disabled person’s Social Security benefits?
Many of these questions came up at a forum held earlier this week by DDS in Easthampton on its sheltered workshop phase-out plan. Among those attending was Ed Orzechowski, president of the Advocacy Network, an organization affiliated with COFAR. Orzechowski noted that the forum was well attended by family members, who expressed concern and anxiety about what will happen to the workshops in which their loved ones have participated for many years.
While admitting that the promised effort to place current workshop participants in “integrated” jobs “will not be easy,” DDS representatives insisted to the families in Easthampton that the state has little choice but to move ahead with the workshop closures. They cited federal lawsuits, filed by the Department of Justice in recent years against the states of Rhode Island and Oregon, alleging that sheltered workshops in those states were segregated settings.
Fear of a federal lawsuit may be behind the Patrick administration’s desire to move as quickly as possible to shut sheltered workshops in Massachusetts. But it’s also the case that the Patrick administration has long subscribed to the Obama administration’s untenable position that all congregate forms of care for the disabled are discriminatory. The effect of this position has been to privatize a growing list of state services to the disabled and thereby put ever more money in the pockets of the CEOs of corporate providers represented by the Arc and the ADDP.
We fear that the effort to shut down sheltered workshops is really largely about more money for corporate providers of day programs. It is also about forcing people into a theoretical model of care, which, as usual, denies them and their families any say in that model. As one commenter to a previous post of ours said, the CMS and DDS-supported workshop model is akin to forcing her to spend her days with either a group of astrophysicists or teen skateboarders even though she happens to have nothing in common with those two groups.
We hope that at the very least, DDS will agree to keep sheltered workshops open in the state as long as it takes to place all of the current participants in them in promised jobs in the mainstream workforce. DDS has an obligation to provide continuity of service to these individuals and their families. Their lives should not be placed in upheaval based on a plan fraught with so many unanswered questions.
‘Real Lives’ bill gets more real
A redraft of a bill that calls for “self-determination” in services for persons with developmental disabilities in Massachusetts no longer calls for creation of a fund that would subsidize corporate providers to the Department of Developmental Services for not providing services.
In addition, the redraft of the “Real Lives” bill by the office of state Senator Michael Barrett, co-chair of the Children, Families, and Persons with Disabilities Committee, appears intended to ensure that an advisory board that would be established under the bill would not be dominated by providers. According to the redraft, more than half the membership of the advisory board must consist of family members and other participants who are “financially independent” of any provider of services to DDS clients.
Among those specifically named to the advisory board would be the state auditor and inspector general.
The “Real Lives bill,” which was originally sponsored by state Representative Tom Sannicandro and then state Senator (now Congresswoman) Katherine Clark, is intended to give individuals more choice and say in the services they receive from the Department of Developmental Services. COFAR was among a number of organizations invited earlier this year by Barrett’s staff to comment on the redraft of the proposed legislation.
It isn’t clear when the full Children and Families Committee will vote on the redrafted bill.
Self-determination or “self-directed services” are part of a national movement in care of the disabled that is intended to provide individuals with “opportunities and experiences that enable them to exert control in their lives and to advocate on their own behalf,” according to the American Association of Intellectual and Developmental Disabilities. Under the redrafted Real Lives bill, individuals with developmental disabilities or their guardians would be given a certain degree of authority to develop their own state-funded budgets from which they could select and “purchase” services identified in Individual Care Plans (ISPs).
While we at COFAR still have a number of concerns about the bill, we support many of the changes in the redraft, including the removal of a proposed “contingency fund” in Sannicandro’s and Clark’s previous version, which would have been used to inappropriately subsidize providers that lost residential clients who had chosen to live elsewhere. In effect, as we’ve argued, the fund would have subsidized providers for not providing services.
We also strongly support provisions in the redraft that require disclosure of services and supports available to participants as well as information that would enable participants to chose among providers and programs.
It is not clear what the positions of the major provider-based advocacy organizations in the state – notably the Arc of Massachusetts and the Association of Developmental Disabilities Providers – are regarding the current version of the bill. Both organizations were in support of the previous draft of the bill, which we had strongly objected to. Neither the Arc nor the ADDP appear to have commented publicly on the redraft by Barrett’s office.
Our main concerns concerning the redraft of the bill (as well as with the original version of the measure) are the following:
- It is not clear to us how “self-determination,” as defined in the redraft of the bill is substantially different than the current ISP process as specified in current laws and regulations.
- The bill should include a requirement that participants in self-determination be provided with the explicit choice, as specified in federal law, of all residential options, including Intermediate Care Facility (ICF) and state-operated group homes, in addition to other forms of community-based and home-based care.
- The bill should make it clear that in cases in which a developmentally disabled person has a legal guardian, all decisions regarding supports and services would be made by the guardian and not the incapacitated individual.
- The bill would establish positions, such as “independent facilitators,” which might be duplicative of existing state positions, such as service coordinators. We think the independent facilitator positions should be removed from the bill.
- The bill essentially puts money into the pockets of people who are disabled, potentially making them targets for exploitation.
In some key areas, the redraft is a major improvement over the original version of the bill, which had specified that members of both the Association of Developmental Disabilities Providers and the Arc of Massachusetts, an organization affiliated with the ADDP, would sit on the advisory board. The advisory board would also have included a number of community-based advocacy organizations that share the Arc’s and ADDP’s support for privatizing state-run services for the developmentally disabled.
This same provider-dominated advisory board in the original bill would have been authorized to “assist” DDS in developing the contingency fund, mentioned above, which would have provided subsidies to the providers. Under the original version of the bill, the fund would have been “comprised of 40% of the savings from the closure of Monson, Glavin and Templeton (developmental centers)….”
The redrafted bill removed the contingency fund entirely from the measure and states that the advisory board:
… shall have 21 members, including but not limited to participants, family members, legal representatives or guardians of participants, financial management services, independent facilitators, providers of direct services, supports and goods, department staff, members of advocacy organizations, members representing general taxpayers, and independent experts on consumer decision-making, consumer finance, self-determination models, nonprofit and for-profit services markets and competition, and services for persons with disabilities; provided, however, that more than 50 per cent of the advisory board shall consist of participants, family members, independent experts, members of organizations representing general taxpayers, and other persons financially independent of any entity providing direct services, supports or goods to persons with disabilities…
There is no longer any mention in the redraft of the Arc or the ADDP. Nevertheless, we foresee some problems in the setup of the board as it is described in the redraft.
Under the redraft, the advisory board would still be chosen by DDS, which has long maintained close ties to the Arc and the ADDP. It may be a matter of interpretation as to what is meant by “persons financially independent” of any provider-based entities. DDS might still load the board with members of advocacy groups who may have no explicit financial ties to the providers, but who are nevertheless advocates of privatized services.
We think it might be best to scrap the advisory board altogether in the bill and encourage DDS to seek advice and guidance from all stakeholders in public hearings in developing a self-directed services program. That would open up the process to all public input and make it more transparent as well.
Also, the chief justice of the probate court as well as the district attorneys across the state should be consulted for their input on the bill. The probate court will have a natural interest in proposed legislation that may potentially limit the role of guardians. As currently written, the bill “does an end run around the guardianship statute,” according to Thomas Frain, an attorney and COFAR Board president.
Frain also maintains that the district attorney’s offices should be consulted “for the inevitable exploitation of intellectually disabled people that will arrive along with this next chapter in the self determination story. Although improved following its review by Senator Barrett and his staff, the bill appears to be yet another attempt by corporations to divert more taxpayer monies into their own pockets, regardless of whether any of it actually gets to the intended beneficiaries: the intellectually disabled,” Frain maintains.
We hope Senator Barrett’s improvements hold up at the very least, and that further improvements are made in this bill as it comes out of the Children and Families Committee and moves through the House and Senate.
The governor’s FY ’15 budget for DDS is out of balance
Governor Deval Patrick has proposed a whopping $162 million increase in funding for residential care provided by corporate providers to the Department of Developmental Services in the coming fiscal year.
The proposed 19 percent increase in funding is intended to raise rates paid to the providers as stipulated in a provider-backed law passed in 2008. If the Legislature accepts the governor’s proposal, it would bring the DDS corporate provider line item to over $1 billion, which would represent a 64 percent increase in funding since FY 2007, adjusted for inflation, according to the Massachusetts Budget and Policy Center’s online budget analyzer.
The proposed $162 million increase for FY 15 matches the increase Massachusetts provider-based advocacy organizations have requested for the provider residential line item.
The problem is that the governor’s FY 15 budget continues an unbalanced approach to the care of people with developmental disabilities. It would provide a huge increase in funding to a network of corporate contractors to DDS with a bureaucracy of highly paid executives, while continuing to bleed other DDS state and community-based accounts.
As has been the case in recent years, the administration has not been as generous in proposing funding for state-operated programs and state employees working in the DDS system and even for some other community-based programs. State-operated group homes have been the destination of many of the residents of developmental centers that the administration has closed in recent years, and the governor’s proposed FY 15 proposal for state-operated residences would represent a 44 percent increase in funding since FY 2007. While welcome, that increase would still be 20 percent less than the provider-run group home increase over the same period of time.
Funding for developmental centers, meanwhile, has plummeted by 47 percent in inflation-adjusted numbers since FY 2007. While the Monson and Glavin developmental centers have been closed and most of the residents of two other centers have been moved elsewhere, the residential population of the Wrentham Developmental Center has been increased to over 300. Yet, Governor Patrick has proposed a further $13.4 million cut in the developmental center line item for the coming year, amounting to 12.7 percent cut in FY 15 dollars.
In testimony prepared for today’s hearing by the Joint Ways and Means Committee on the FY 15 budget, the Massachusetts Nurses Association calls for adequate funding for the developmental centers and a more balanced approach to DDS funding in general. “We believe that rather than investing such a large sum of money into privatized services (the governor’s proposed $162 million increase in the provider residential line item), where a significant portion will go to pay for administrative services rather than direct care services, these funds could better serve Massachusetts residents if invested in these line items and state-operated, community-based services,” Michael D’Intinosanto, RN, president of MNA’s Unit 7, states in his written testimony.
Proposed funding for service coordinators, who are DDS employees, has barely kept pace with inflation. Service coordinators, who are responsible for ensuring that DDS clients throughout the system are receiving services to which they are entitled, have seen their caseloads rise dramatically in recent years. In real terms, funding for the DDS administrative line item, which includes the service coordinators , would still be 22 percent lower than it was in Fiscal Year 2007 if the governor’s FY 15 budget is approved.
In his FY 15 budget proposal, Governor Patrick has proposed a $1.8 million increase in the DDS administrative and service coordinator line item, which is less than a 1 percent increase from current-year funding in FY 15 dollars, according to the Massachusetts Budget and Policy Center’s budget analyzer.
Other DDS accounts for community-based services have also not fared as well as the provider-run residential account. The governor has proposed virtually no increase for next year in the $5.6 million line item for the DDS Autism Division, which amounts to a cut of 1.8 percent in FY 2015 dollars. The providers are asking for an additional $3 million in this account, or more than a 50 percent increase. They contend there are more than 400 people with autism on a waiting list for services.
Also facing a cut in real terms in the coming fiscal year in the governor’s proposed budget is the Turning 22 program, which funds services for individuals who have graduated from the special education system. The providers have asked for a $15.2 million increase in the Turning 22 account, which would more than double the current-year funding of $6.5 million. Funding for Turning 22 will have been cut by 35 percent since FY 2007 in FY 15 dollars, if the governor’s budget proposal is adopted.
The short and long-term funding trends for other DDS line items include the following:
- Transportation: The governor proposed a $2.8 million increase in this line item for FY 15, which represents a 20 percent increase in funding over the current year. That total funding of $15.9 million would still be 4 percent less than what was budgeted for this line item in FY 2007, in FY 15 dollars.
- Family and Respite Services: The governor’s budget proposal would only increase funding for family support and respite services by less than 3 percent in inflation-adjusted numbers.
- Community Day and Work: The governor proposed a $17.3 million increase in this line item, or 8.5 percent in real terms for next year. The line item will have been increased by about 30 percent in FY 15 dollars since FY 2007.
The providers appear to be asking for $5.5 million on top of the governor’s proposed $17.3 million increase in the Community Day and Work line item, which would boost the inflation-adjusted increase in the account by about 12 percent. The providers maintain that the additional funding will be needed to provide work opportunities for developmentally disabled persons in the wake of the state’s unfortunate decision to shut down sheltered workshops throughout the commonwealth. The providers maintain the governor has proposed only half the money needed to convert the sheltered workshop programs to mainstream work opportunities.
We hope the Legislature finally takes some steps to restore some balance to the DDS system. It’s time to rethink the relentless privatization of state-run services and an anti-congregate care ideology that is reducing the availability and quality of services to many of our most vulnerable citizens.
Sara Duzan’s guardian was formerly against the use of restraints on her
The court-appointed guardian for Sara Duzan, who is now supportive of her care in a group home where Sara has been subjected to restraints and seclusion, strongly opposed the use of those methods for controlling her behavior in two previous publicly funded residences.
Emails and other records in the case show that both Lynne Turner, Sara’s guardian, and Turner’s husband, Michael, were highly critical in late 2011 and early 2012 of Sara’s care and treatment at the Spaulding Youth Center in New Hampshire and the Kolburne School in New Marlborough, MA. In addition, Michael Turner, who was the attorney for Sara’s family until December 2011, criticized Sara’s previous guardian for having cut off all communication between Sara and her family.
The circumstances of 2011 and 2012 appear to have repeated themselves in the past several months, only it is now Lynne Turner who, as Sara’s guardian, has cut off all family communication with her and appears to be in support of the use of physical restraints on her and enforced seclusion in her current residence operated by Becket Family of Services.
Lynne Turner has billed the family for her guardianship services, but the Duzans have refused to pay, contending they were initially assured there would be no charge for those services and that there was never any court order or agreement that they pay her.
I sent several email and telephone requests to Lynne Turner, asking, among other things, whether she has visited Sara yet in the Becket residence and whether she is satisfied that the staff there are using restraints and seclusion appropriately on Sara. Other than to say in an email that she is a sole practicing attorney, in response to a question about her professional relationship to her husband, Turner did not respond to my questions.
Meanwhile, Massachusetts state Representative Paul McMurtry, whose district includes the Duzans’ hometown of Westwood, said he was committed “to doing everything possible to realize the goal of Sara’s return to her family.” McMurtry called the cutoff in all family communication with Sara “heartbreaking,” and said he finds it “unacceptable” that Sara’s parents have been forced to spend a large portion of their life savings in legal fees in a battle in the probate court system over their daughter’s care.
Guardian says care and treatment plan is appropriate at Becket residence
In a guardianship report filed with the Norfolk County Probate Court on December 13, Lynne Turner stated that Sara’s care and treatment plan in her current residence “appears to be appropriate,” and that the “director and clinical director have been very attentive to Sara’s behavior and needs.” Turner’s report did not mention the use of restraints or seclusion on Sara by that facility. Turner also stated in the report that she had never visited Sara in the Becket residence, in which she had placed her on July 24.
Sara was placed in physical restraints in the Becket residence 37 times and was placed in seclusion 59 times between last July and November, according to clinical records filed with Turner’s guardianship report.
Turner, who was appointed Sara’s guardian in December 2011, has upheld restrictions on all family contact with Sara in her current residence. The Duzans have been prohibited from visiting her since last July and from contacting her in any way since before Thanksgiving. Turner further prevented the family even from sending Sara presents at Christmas; and Sara’s mother, Maryann, says flowers sent by the family to Sara were not given to her.
Maryann Duzan contends that the reason for the latest cutoff in all family contact with Sara has been to prevent the family from learning more about the extent of the use of restraints and seclusion on Sara in her current residence and the effect those techniques are having on her. Restraints, in particular, have become increasingly controversial, and have been found to cause injury and death in some instances to persons subjected to them.
“We just want our daughter back,” her father, Paul Duzan, said. “We’re very concerned about what’s happening to her, and we’re not even allowed to ask about it.”
Sara, now 22, has a rare genetic disorder called Smith Magenis Syndrome, which is characterized by intellectual disability and behavioral outbursts. The Duzans lost their guardianship of Sara in 2009, stemming from an admission by Maryann that she once slapped her daughter on the cheek, and the conclusion of a probate judge that the family has been uncooperative with providers in caring for her.
Maryann says she slapped Sara lightly because Sara was acting aggressively while at home and was threatening to throw a radio at her. Her admission of the slap, however, led to an investigation of the Duzans by the Disabled Persons Protection Commission, which then filed motions in probate court to limit the family’s guardianship of Sara. In 2010, a probate court judge ruled the family unfit as guardians, but nevertheless characterized the Duzans as a loving family toward Sara.
Maryann maintains that while Sara was in their care, the family never used restraints on her even when she had behavioral issues at home. The Duzans and many other families with children with Smith Magenis Syndrome maintain that the use of restraints, in particular, on persons with the syndrome is counter-productive and actually makes their behavior more violent.
Guardian said restraints in previous residences were abusive
In 2011 and 2012, Lynne Turner appeared to have been in strong agreement with the Duzans that restraints used on Sara were inappropriate and counter-productive. In a January 24, 2012 email, written shortly after her appointment as Sara’s guardian, Turner stated that Sara “has been abused in two programs.” Turner’s statement was in reference to allegations by the Duzan family that Sara had been abusively restrained at the Spaulding Youth Center between 2008 and 2010, and at the Kolburne School in 2011.
Turner’s January 2012 email alleging abuse of Sara in the two programs was written to Aaron Ginsberg, a staff attorney for the New Hampshire Disabilities Rights Center, who found that the Spaulding Center had subjected Sara to hundreds of inappropriate restraints between 2008 and 2010. Ginsberg noted that Sara frequently suffered bruises and other injuries from what are known as prone restraints, and was subjected to hours of enforced seclusion. In addition, staff at the facility joked about Sara and other residents of the facility on Facebook, Ginsberg stated in a DRC memo.
Photo taken by Maryann Duzan of injuries to Sara’s arms, which Maryann claims were the result of physical restraints used on her at the Kolburne School in 2011. At the time, Lynne Turner, now Sara’s guardian, was highly critical of the use of restraints on Sara.
Photo taken by Maryann of injuries to Sara’s right foot, allegedly resulting from restraints used on her at the Kolburne School in 2011.
Complaints alleged abuse at Spaulding and Kolburne
Lynne Turner’s January 24, 2012 email to Ginsberg included an attached draft document, which echoed Ginsberg’s findings regarding the restraints used on Sara at Spaulding. The document was a draft complaint to the director of the Bureau of Special Education Appeals, charging that Sara was being “brutalized” at the Spaulding facility, and that the Westwood School District, which was then providing her special education services, had failed to investigate the alleged abuse.
The allegations in the draft BSEA complaint were originally made in a legal claim, sent by Lynne Turner’s husband, Michael, to Governor Deval Patrick and Attorney General Martha Coakley on March 11, 2011. Michael Turner, with whom Lynne Turner shares a law office in Marion, MA, was working at the time as the Duzans’ attorney in their probate court battle over Sara’s care and guardianship. His claim announced that he intended to file a $5 million lawsuit against DDS and the Disabled Persons Protection Commission on behalf of the Duzans in connection with the alleged abuse of Sara at the Spaulding and Kolburne facilities. The lawsuit was never filed.
The draft complaint to the BSEA and Michael Turner’s legal claim both alleged that Sara was being restrained for up to 70 hours a week “in dangerous restraints,” and that she was “hit, tripped, locked in her room (at the Spaulding facility) and routinely demeaned by Spaulding Staff on Facebook and in person.” According to the documents, Maryann and Paul Duzan “reported this action to the responsible agencies, including Westwood (the Westwood School District), who left her at Spaulding for months of continued abuse after the egregious physical and emotional abuse became known.”
The draft BSEA complaint and Michael Turner’s claim added that:
Quite often, Sara was restrained naked, by male staff, and female staff just stood by and watched. The staff commented about Sara regularly on their Face Book pages. All of this information was brought to Westwood’s attention but Westwood did nothing. Westwood allowed the cruel torture to continue not only in violation of Massachusetts’ Law but Federal Law and the International Treaty the United States signed against torture. Westwood did not care and did nothing; Westwood continued to blame the parents…
…This pattern is seen during Sara’s elementary years when Westwood built a box in Sara’s classroom in which to dump Sara, in which she would scream for hours and no one would care for her or help her. Westwood never informed the parents of this cell nor was this cell in the IEP (Individual Education Plan for Sara) or in a behavior plan the parents signed. This cell was only discovered by the parents when Sara came home with some of her teeth in a plastic bag. Sara lost a number of teeth while in the cell, urinated on herself because they would not let her out. The abuse Westwood visited upon Sara, at Spaulding, was and is only part of the years of abuse perpetrated upon Sara by Westwood.
Michael Turner’s claim also alleged that at the Kolburne School, Sara became infected with MRSA and ringworm, and that “the DPPC (Massachusetts Disabled Persons Protection Commission) has done nothing about protecting Sara from the mistreatment at Kolburne and has arbitrarily screened out all complaints out (sic).”
Earlier, in a November 16, 2011 email, prior to her appointment as Sara’s guardian, Lynne Turner offered advice to Maryann Duzan on seeking an investigation by the Disability Law Center, a federally funded legal advocacy organization, of Sara’s care at the Kolburne facility. In her email, Turner criticized both the Massachusetts Department of Developmental Services and the Disabled Persons Protection Commission for allegedly failing to respond to the Duzans’ requests that the two agencies investigate Sara’s care at Kolburne. Turner advised Maryann Duzan to say she had requested an investigation of Sara’s care by the Disability Law Center:
… because DPPC and DDS did not exercise their investigatory powers appropriately. They clearly failed to exercise due diligence in the investigation of Sara Duzan’s mistreatment and her injuries and failed to keep her safe. The Disability Law Center has pictures of Sara’s injuries which substantiate the abuse and neglect suffered at the hands of Kolburn (sic) staff which DDS and the DPPC have totally ignored and it would appear so has the Disability Law Center.
A photo of Sara at about the age of 10. She lived at home until the age of 18. The family says they never used restraints on Sara. The use of restraints on persons with Smith Magenis Syndrome has been criticized as counter-productive.
In 2009, the Duzans attempted to enlist the DPPC and DDS in investigating their abuse allegations. Both the DPPC and DDS, however, instead went after the Duzans themselves, accusing them of abusing Sara and causing her emotional distress. None of those allegations has been upheld, other than the charge that Sara’s mother, Maryann, had slapped her on the cheek on one occasion in 2009.
The draft BSEA complaint, attached by Lynne Turner to her email to Ginsberg, and Michael Turner’s claim to the governor and attorney general both characterized the allegations against Maryann and other family members of abuse as “egregiously false,” and stated that they had led to the removal of the Duzan family members as Sara’s guardians.
Maryann Duzan says the Disability Law Center declined the family’s requests in 2010 and 2011 to investigate Sara’s care at Spaulding and later Kolburne. Last week, the family contacted the Disability Law Center once again, seeking an investigation of Sara’s current situation.
Michael Turner alleged Sara was “brutalized” at Spaulding and Kolburne
In June 2011, Michael Turner filed a motion with the Norfolk County Probate Court to remove Sara from the Kolburne School, stating that Sara was being mistreated there. In his motion, Turner maintained that in a previous special education program in a public school in Arlington, MA, Sara had not been subjected to any restraints, but that “Spaulding and Kolburne brutalize Sara with restraints day after day.” Turner added that: “Kolburne now claims the injuries in the photos are self-inflicted wounds. One can only wonder what this brutal behavior by the various staff members has done to damage Sara emotionally, physically and socially.”
Michael Turner also alleged that Sara’s then guardian, Daniel Smith, the executive director of the Arc of Greater Fall River, had done nothing about the alleged abuse inflicted on Sara at Kolburne, and that Smith had inappropriately cut off all contact between Sara and her family. Turner’s motion stated that the cutoff in communication:
…only continues the outrageous abuse Kolburne has suffered (sic) upon Sara which Dan Smith has pictures of and written reports of each incident per the Department of Education Regulations.
The only possible reason for Dan Smith to deny parental access to Sara Duzan is so they will not lean of the ongoing abuse of Sara which Daniel Smith has known of since Sara was at the Spaulding Center and did nothing.
Michael Turner’s motion to remove Sara from Kolburne was denied by Probate Court Judge Angela Ordonez, resulting in an additional six months of confinement for Sara at the facility; however, Sara was returned to her parents’ home in December 2011 on Lynne Turner’s order as Sara’s new guardian. She lived at home until January 2013 with no state services or state-agency scrutiny, according to Maryann. At that point, Lynne Turner placed her in a residential program in Brewster where she remained until she turned 22 last July. Turner then placed her in the Becket residence, which is a DDS-funded facility. The Duzans say they objected to the Becket placement, requesting that Sara be returned home, but Turner denied their request.
On the home page of Michael Turner’s law firm website, a video from the Nancy Grace show contains a highly critical news feature about teachers in the Barnstable School District using physical restraints on autistic children. Michael Turner is seen commenting in the video that by placing one particular child in restraints, a teacher was “training her to become a very violent child.” The website states that Michael Turner “has been representing children and their families in school related issues for many years in the areas of Special Education Services (and) rights and appeals of deficient services…”
In an email sent to Lynne Turner on January 28, I asked whether she supported her husband’s statements about restraints in the video on his website. As noted above, I received no response to that question or to a question about her position on restraints at the Becket residence.
The family has declined to pay Turner for guardianship services
The Duzan family has declined to pay for Lynne Turner’s guardianship services since she was appointed as Sara’s guardian by the probate court in December 2011. The family contends the court order contained no provision for payment of Turner and that it is not their responsibility to pay her. The Duzans also contend that Turner has not been acting in Sara’s best interest by allowing her to remain in the Becket residence and by cutting off their communication with her.
Turner sent a bill to the family for payment for guardianship services, dated June 7, 2012, for $4,210. The bill claimed roughly 77 hours of work done by Turner, and 7 hours by a paralegal in her firm, both at a $50-per-hour rate, since Turner’s appointment as guardian in December 2011. Turner initially proposed a contract for her guardianship services for Sara that would have required the Duzan family to pay fees of $200 per hour to Turner, $200 per hour to another unnamed attorney in her firm, and $75 per hour to a paralegal and $25 per hour to a clerk in the firm.
The proposed contract was signed by Lynne Turner, but the Duzans refused to sign it. Maryann and her son, David, said they had been assured by Michael Turner, prior to proposing his wife as Sara’s guardian, that there would not be a charge for her services. Lynne Turner’s proposed contract, however, referred to a court order that the family pay for Turner’s guardianship services, but Maryann maintains there was never a court order to that effect.
Lynne Turner subsequently proposed a contract for guardianship services that specified a $50-per-hour charge to the Duzans for her services, $50 per hour to another unnamed attorney in the firm, $25 per hour to a paralegal, and no charge for clerical services. The Duzans refused to sign that contract as well.
The Duzan family recently retained attorney Thomas Frain, who is COFAR’s president, to represent them in their efforts to return Sara home. In response to a request from Frain to Lynne Turner for records relating to Sara’s care in the Becket residence, Turner responded that she would provide the records upon payment of $10,000 to her. She said that the requested payment included $5,000 for producing the records themselves and an additional $5,000 for her unpaid guardianship services for Sara Duzan.
“Ten thousand dollars is a high price to pay to find out if your loved one is alive, well and being cared for,” Paul Duzan said.
To contact the governor’s office about this case:
Contact info for the Governor’s Office: Massachusetts State House Office of the Governor Room 105 Boston, MA 02133 Phone: 617.725.4005 888.870.7770 (in state) Fax: 617.727.9725 TTY: 617.727.3666 Email: constituent.services@state.ma.us
Also, please sign our petition to the governor to bring Sara home on change.org. Thanks!
The politically incorrect idea of bringing congregate and community care together
Two initiatives in two separate states call for something that would seem to make perfect sense — expand the missions of congregate care facilities for the developmentally disabled, and merge them with their surrounding communities.
In one case, the State of Delaware is proposing to expand services available at the Stockley Developmental Center by offering medical and dental care now available there to developmentally disabled and under-served persons living in the community. A Delaware state task force has also called for considering an indoor community sports center or outdoor playing fields at the Stockley facility; and opening up a therapeutic horseback riding program and a therapeutic pool at Stockley to the surrounding community as well.
Like most of the developmental centers in Massachusetts, the Stockley Center sits on hundreds of acres of largely unused land, and currently serves only a small fraction of the hundreds of people who lived there four decades ago.
In the second initiative, the Arc of Jacksonville in Florida has been awarded state funding and tax credits to help construct a “planned neighborhood” in that state for adults with intellectual and developmental disabilities, according to The Florida Times Union. The newspaper reported that the “Arc Village” will house about 120 adults – ages 18 and older – in 97 one- and two-bedroom apartments. The $17.7 million project will allow residents to “live, work, shop, recreate, and socialize,” in one place.
Unfortunately, neither of these innovative initiatives would be likely to move forward in the “progressive” state of Massachusetts, and neither may get the backing of the Obama administration. That’s because each of the proposals envisions providing services to a large number of people in one location — a non-starter to the ideological opponents of “congregate care.”
Congregate care, you see, is “institutional,” and therefore bad by definition for people with developmental disabilities. It’s apparently better that they live in small group homes or apartments dispersed throughout the state. We happen to think that placing everyone in dispersed group homes or apartments is actually a recipe for isolation and a new form of warehousing of people with developmental disabilities, all the while lining the pockets of the executives of hundreds of state-funded, corporate providers. (More about that in a coming post.)
But the Patrick administration in Massachusetts has voiced its opposition to congregate care and has moved to close four out of six remaining developmental centers in this state. Two of those centers have now been shut and most the residents have moved either to one of the two remaining centers or to group homes throughout the commonwealth. Longstanding proposals by advocates of those developmental centers to more effectively merge them with their surrounding communities — similar to the Delaware proposal for the Stockley Center — were all rebuffed by the Patrick administration.
Meanwhile, the federal Centers for Medicare and Medicaid Services (CMS) are moving to change their definition of federally reimbursable community-based care to exclude even group homes that happen to be located on the grounds of, or even near to, a public institution such as a developmental center. And the National Council on Disability has declared that an “institution” is a “facility of four or more people who did not choose to live together.” The NCD’s definition, which applies even to many group homes, was contained in a report in 2012 that states in its first sentence that closure of all such “institutions” should be “a top public policy priority in every state where such institutions exist.” The NCD advises the president and Congress on disability issues.
It’s hard to imagine the NCD supporting the Arc of Jacksonville’s proposal, in particular, which would establish a single setting, albeit a “neighborhood,” which would house 120 clients. And the Stockley Center proposal would not appear to conform to the CMS’s proposed definition of community-based care.
It seems to us, though, that the inclusive approaches being proposed in Delaware and Florida represent the future of care of the developmentally disabled in this country. Both proposals appear to recognize that congregate care is a valid option for people who want and need it, and that it can coexist with, and even be a part of, community-based care. Note that we’re not saying congregate care is right for everyone or that it should replace care in smaller settings.
The administration of Delaware Governor Jack Markell certainly appears to recognize that a congregate care center such as Stockley, which meets federal Intermediate Care Facility ICF/DD) standards, is worth maintaining as a residential option for its current residents. The Delaware state task force report states among its “general principles” that its proposal for the Stockley Center would include “a commitment to maintain and build upon a peaceful environment that the people at Stockley Center currently enjoy.”
Rita Landgraf, secretary of the Delaware Department of Health and Social Services, was quoted in The Wilmington (DE) News Journal as saying: “We do have individuals who still live here on site. It is critically important that we bring inclusion to them. This was not a discussion of closing Stockley. Sometimes I hear that, out in the public. But we are not closing Stockley.”
Among the specific task force proposals for the Stockley Center that would establish the center as a critical component of community-based care in Delaware are the following:
- Creation at the Stockley facility of a “Center for Excellence,” which would offer “integrated health support and disease prevention services to communities for which health services are hard to access.”
- Creation of a facility at Stockley to support respite care, both for individuals with disabilities in the community system and caregivers.
- Expanding the use of the Stockley pool or other therapeutic facilities for individuals with disabilities “first in Sussex County (DE) and beyond, as feasible.”
- Creating an “intergenerational multi-use center for wellness that supports active living and wellness, including classes for smoking cessation, fitness, nutrition, behavioral health, obesity, cardiovascular disease and stress management.”
- Developing fully accessible community vegetable gardens for an “integrated community” of county residents, including low income families; and hosting a farmers’ market.
- Creating a “model of mixed-use development”on the Stockley campus site, including affordable housing, stores, restaurants, dental and medical, and recreational facilities.
- Creating a training center to provide professional development for medical and care providers.
- Encouraging schools to use the Stockley property for nature and science instruction.
- Providing education, support, life skills and vocational or job training programs for people with disabilities.
- Creating a center for volunteer and nonprofit groups.
- Creating an outdoor trail system for users of all ages and abilities.
Contrast the excitement and vision of that approach with Massachusetts where we’ve seen only the systematic dismantling of congregate care for people with developmental disabilities. We will soon be down to two remaining ICF-level care centers, and what remains of state-operated care is under siege as facilities and services continue to be privatized. It’s refreshing to know that not all state administrations have that mindset, and that in some places, new ideas are being tried by people who are not blinded by outdated ideologies. We, however, are being left in their dust.
COFAR blog 