House leadership rejects politically correct view on sheltered workshops

April 18, 2014 4 comments

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

April 11, 2014 1 comment

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

March 21, 2014 11 comments

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

March 11, 2014 2 comments

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

March 7, 2014 1 comment

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.

Guardian and Special Master point to each other regarding the release of Sara Duzan’s clinical records

February 25, 2014 3 comments

A court-appointed guardian for Sara Duzan and a psychologist appointed to oversee the guardianship have both declined to release clinical records about Sara’s care to her family, with each saying it is the other’s responsibility to provide them.

The family has been seeking the records to verify a claim made by the guardian, Lynne Turner, that Sara has “has been progressing very well” in recent months in a group residence operated by Becket Family of Services, a corporate provider funded by the state Department of Developmental Services.   Turner has forbidden the family from communicating with Sara since November and from visiting her since last July, when she was first placed in the Westminster residence by Turner.

Members of the Duzan family say they are concerned that Sara has been subjected to abusive physical restraints and seclusion at the Becket residence, but that they have had no way of knowing what Sara’s care and living conditions really are.

Both Turner and Andrea Barnes, a clinical psychologist, who was appointed in July 2013 as a Special Master in the probate court case, have each contended in emails and letters in recent weeks that it is the other’s responsibility to provide Sara’s clinical records to the family.

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 both an admission by Sara’s mother, Maryann, that she once slapped her daughter on the cheek, and the conclusion of a probate judge in 2010 that the family had been uncooperative with providers in caring for her.  Maryann said she slapped Sara on the cheek on one occasion in 2009 while Sara was acting aggressively towards her.

Sara with her father, Paul, on an outing a couple of years ago in western Massachusetts. The family is no longer permitted any contact with Sara and has even been denied her clinical records.

Sara Duzan with her father, Paul, on an outing a couple of years ago in western Massachusetts. The family is no longer permitted any contact with Sara, and has even been denied access to records of her care in her current  DDS-funded residence.

Thomas Frain, an attorney for the Duzan family, initially wrote to Turner on January 10 of this year, requesting Sara’s medical administration records, behavioral plan, records regarding restraints, shift notes and other clinical records concerning her care in the Becket residence.   Frain is also the president of COFAR’s Board of Directors.

Turner initially responded to Frain’s request with a letter, dated January 12, in which she stated that she would produce the requested documents if she was first paid $10,000.  Her letter stated that her requested payment consisted of $5,000 for producing the records themselves and $5,000 in back payments for her work as guardian.

Turner, who was appointed Sara’s guardian in December 2011, has billed the Duzan family for her guardianship services, but the family has declined to pay her, contending the court order under which Turner was appointed contained no provision for payment of her.  The Duzans also contend that Turner has not been acting in Sara’s best interest by keeping her in the Becket residence and by cutting off the family’s communication with her.

Following her letter seeking payment of $10,000, Turner sent Frain a second letter, dated February 2, in which she stated that she did not control Sara’s records or have responsibility for producing them.  She stated: “Your concern for Sara should be directed to Dr. Barnes, not me.  Dr. Barnes was copied in your letter to me and has the list of documents you requested.  She is paid for her work.  I am not.”

Frain then wrote to Barnes on February 7, asking her to provide the documents.  But in an email in response, dated February 11, Barnes stated she was “not in a position” to provide the records and that it was not her “role” to do so.  She also maintained that she was personally “reluctant to supply” the family with the records because the family has been “uncooperative” and has taken an “adversarial and antagonistic position, soliciting support through blogs and public campaigning rather than making any attempt to work with Sara’s providers or with me.”

Barnes added that Turner, as guardian, had the authority to release the records to the family and that she (Barnes) was “not at this time going to overrule the guardian’s decisions about sharing documents.”

I sent an email to both Turner and Barnes on February 21, asking for clarification as to which of them had responsibility for releasing the records and why the publication of blog posts about the family should preclude them from receiving records about their daughter’s care.  I noted that the records were “vital in assessing any claims made about the use restraints or other aspects of (Sara’s) care, treatment and living conditions in her residence…”

I also asked in my email to Turner and Barnes whether either of them had yet visited Sara in her residence since she was placed there by Turner in July.   I have so far received no reply to my message from either Barnes or Turner.

Turner stated in a guardianship report to the probate court in December that she had not yet visited Sara in the Becket residence. For her part, Barnes stated in a November 25 email to Maryann and Paul Duzan, Sara’s father, that she intended to visit Sara at Becket “sometime in the next few weeks.”  The family says they have received no indication that Barnes has done so.

Barnes’ November 25 email was in response to a message from Maryann and Paul, asking for Sara’s immediate discharge from the Becket residence because Sara had indicated in phone conversations to them that she was being subjected to restraints and had been assaulted by a staff member.  Barnes responded that she had not received any information “supporting the idea that Sara is being abused.”

In her February 2 letter to Frain, Turner maintained that “Sara is progressing very well and is regularly out and about in the community.”  Turner stated that Sara’s behavior had “improved substantially,” and that physical restraints had not been used on Sara in over a month “and maybe longer.”

Turner further implied that Sara’s clinical records would verify her positive claims regarding Sara’s progress in the Becket residence.  “Are you disputing the fact that Sara is progressing very well and out in the community?” Turner’s letter to Frain stated.  ” If you doubt my word, address this with Dr. Barnes…She has the documentation you seek.”

The only clinical records the family has seen regarding Sara’s care at the Becket facility has been a clinical report, which Turner forwarded to the family in December along with her annual guardianship report to the probate court.  That report stated that Sara was continuing to be restrained and placed in seclusion in the Becket residence through the month of November.

In her February 2 letter, Turner also defended her decision to cut off the family’s phone contact with their daughter, stating to Frain that “the acting out behaviors and the restraints you expressed concern about were more frequent when there was inappropriate phone contact with the family.”

Both Turner and Robin Thompson, a clinician at the Becket residence, have maintained that the Duzans violated a telephone protocol established for them, which expressly forbade them from discussing visits home or whether Sara was unhappy at the facility or its treatment of her.  Sara was also specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints.

Maryann Duzan says that she and other family members were allowed only six calls to Sara between July, when she was placed at the Becket residence, and November, when their communication with her was cut off; and in each call, Sara indicated that she was being subjected to either poor conditions, abusive restraints, or, in two cases, assaults by a staff member.

Maryann says she believes the strict limits placed by Becket on Sara’s ability to communicate contributed to her behavioral outbursts.  “Sara has apparently only been allowed to use a phone there six times in eight months,” Maryann says.  “She has been denied the ability to report what is happening in her life to her mother and father.”  Maryann adds that while she lived at home, Sara would make at least a dozen calls a day to friends and family members. “Sara is very verbal and social,” she says.

Turner also contended in her February 2 letter to Frain that the Duzans had violated the law by recording conversations “with various parties without their consent.” She provided no further details about that charge.  Maryann contends that she and her husband tape recorded one phone conversation with Sara in September because Sara had told them she had been assaulted by someone on the Becket staff.  Maryann says no one else was recorded in the conversation.  She says she turned the tape recording over to the Westminster Police Department after Sara implicated a staff member in the house as having punched her.

The Disability Law Center is seeking to restore family communication and visitation rights with Sara

In January, both the Duzan family and COFAR contacted the Massachusetts Disability Law Center, a federally funded legal advocacy organization, seeking an investigation of Sara’s care at the Becket facility and the circumstances surrounding the cutoff of the family’s communication with her.  In response, a DLC attorney began visiting Sara in the Becket residence earlier this month.  Maryann Duzan said the DLC attorney is further attempting to restore the family’s right both to communicate with Sara and visit her.

Meanwhile, DDS is in the process of scheduling a meeting regarding Sara’s care plan, known as an Individual Support Plan (or ISP).  In her February 11 email to Frain, Barnes said she believed that “some representative of the Duzan family has a right to attend her ISP meeting.”

The July 2013 probate court order appointing Barnes as Special Master stated that the family “should be invited to all meetings where decisions about Sara’s services will be made or discussed.”  Maryann says the family, however, was invited only to one such meeting scheduled in early November.  She says Barnes cancelled the meeting after Maryann and her husband indicated they wanted to bring their attorney to the meeting.   Maryann adds that the family had been informed the purpose of the meeting was to discuss placing further limits on their communication with Sara.

We have written several times about this case because we believe it raises troubling questions about the power of court-appointed guardians and state-funded corporate providers to overrule families in the care of persons with disabilities.  In this case, a family that has been described as “loving” by a probate court judge, has been denied all communication with their disabled daughter for months and has even been denied access to clinical records that would give them an indication of their daughter’s level of care and well-being.  The family is being kept in the dark about their daughter, and unless an outside agency such as the DLC is successful in intervening, there may be no end to that darkness.

Thus far, it seems to us, the entire system has been stacked against this family.  Even the probate court’s attempts to level the playing field do not appear to have worked.  Barnes, the Special Master, was given the power to overrule the guardian with respect to “Sara’s medical, therapeutic, residential, day program, social and familial matters,”  but she has never done so.

Moreover, in her February 3 email to Turner concerning Frain’s request for the records, Barnes advised Turner to “take whatever is presented by him (Frain) with a grain of salt.” That is an unfortunate statement coming from a Special Master in this case, who was appointed to that position to resolve impasses between the family and Turner.  Barnes is supposed to be a neutral party in this case, but her statement that one side in the dispute should regard the other side “with a grain of salt” appears to call her neutrality into question.

“Our crime appears to have been that we advocated too strongly for Sara,” Maryann says. “But ever since Sara has not had a family member as her guardian, nobody has advocated for her.”

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

Note: Do not let the people in the governor’s office tell you this is a probate court matter and there’s nothing the governor can do about it.  The DDS has long been a party to this case and has fought to limit the Duzans’ rights and involvement with their daughter.

Also, please sign our petition to the governor to bring Sara home on change.org.  Thanks!

State-funded provider execs paid more than $80m a year

February 7, 2014 Leave a comment

More than 550 executives working for some 250 state-funded corporate providers of services to people with developmental disabilities in Massachusetts received a total of $80.5 million in annual compensation as of Fiscal Year 2012, based on nonprofit federal tax reports surveyed by COFAR.

The average compensation among all 559 executives surveyed was $143,969 per year. Among CEOs, the average compensation was $185,809, while executive directors were paid an average of $127,164 in salary and benefits.

According to the COFAR survey, provider executives making over $100,000 a year on average included 97 executive directors, 92 CEOs, 71 chief financial officers, 31 chief operating officers, and 83 vice presidents.  CEOs or presidents of 14 providers made over $300,000 each.

“I think few people realize what the real cost of privatized care is in Massachusetts,” COFAR President Thomas Frain said.  “Do Massachusetts taxpayers really need to be paying hundreds of corporate executives millions of dollars for grossly duplicative duties?  This makes no sense at all.”

COFAR has long been critical of efforts by the Patrick administration and the Romney administration before it to outsource residential and other services to providers without adequate oversight of the growing privatized system. The system appears to have become top-heavy with corporate executives who do not provide direct-care services, but who nevertheless draw large salary and benefits packages.

Most of the providers surveyed are under contract to the Department of Developmental Services, which manages or provides services to people with intellectual disabilities who are over the age of 22.  Frain noted that DDS pays more than $1 billion a year in contracts to service providers, which operate group homes and provide day programs, transportation and other services to tens of thousands of intellectually disabled persons in the DDS system.

State regulations capped state payments to provider executives at approximately $149,000, as of Fiscal Year 2011.  The average compensation among the surveyed executives was slightly less than that amount.  Money earned by executives above the state cap is supposed to come from sources other than state funds.

But while the state cap on executive salaries is intended to limit the total amount of state funds going into the pockets of provider executives, COFAR has reported that the state may not receive complete information on the total compensation paid to provider executives and may not have the capacity to oversee their finances adequately.  Also, COFAR has raised concerns that increasing amounts of money going to provider executives has not translated into higher pay for direct-care workers in Massachusetts.

The state auditor reported last year that in one case involving the May Institute, a DDS provider, hundreds of thousands of dollars in state funds had been paid to company executives in excess of the regulatory cap. COFAR’s executive compensation survey found that the May Institute CEO received $404,900 in compensation in FY 2011 and that a total of 12 company executives were paid a total of $2.5 million that year.

At $404,900, the May Institute CEO was the fifth highest paid CEO on COFAR’s list. Community Systems, Inc. topped the COFAR list of the highest paid CEOs, with two employees listed on the company’s federal tax filing as serving as company CEOs in FY 2011 and drawing combined compensation of $526,755.  Second on the list was Morgan Memorial Goodwill, whose CEO was listed as making $464,572 in FY 2012.

Community Systems federal tax filing states that the company, which is based in Forestdale, MA, took in $14.4 million in revenues in Fiscal Year 2011.  Of that amount, the company received $11.6 million from DDS, according to a 2011 financial report filed with the state’s Operational Services Division.

(The Community Systems OSD report lists only compensation in FY 2011 for two executive directors and does not list the company CEOs.  As a result, OSD appears to have disallowed only $21,000 in funding to the company as having been earned above the regulatory compensation cap.  This appears to confirm COFAR’s  finding that the OSD receives incomplete information from providers on executive compensation.)

In addition to the CEOs listed on the Community Systems federal tax report, two employees were listed as executive directors of the company that year and made a combined total of $276,538.  The OSD report lists the two executive directors of the company as having made only $154,473.

The following chart, based on COFAR’s survey of some 250 providers, shows 30 of the providers with the top earning CEOs (click on it to enlarge).

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