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Questions surround phase-out of sheltered workshops for the developmentally disabled

March 21, 2014 22 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.

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‘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.