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DDS providers pushing Gov. Baker to phase out state-run care

February 13, 2017 3 comments

The major lobbying organizations for corporate providers to the Department of Developmental Services appear to be pushing the Baker administration and the Legislature to privatize more and more state-run care.

And the administration and Legislature have so far appeared to be more than willing to accommodate the providers.

Governor Baker’s Fiscal Year 2018 budget, which he submitted to the Legislature last month, further widens a spending gap between privatized and state-run programs within the Department of Developmental Services. In doing so, it appears largely to satisfy budget requests from both the Arc of Massachusetts and the Association of Developmental Disabilities Providers (ADDP).

In fact, the increase proposed by the governor in funding for privatized group homes is $26 million more than the $20.7 million increase the Arc had sought. The ADDP may be a little disappointed only because that organization had asked for a $176 million increase in that account!

The chart below shows the widening gap in funding for key privatized and state-run DDS services over the past several years, adjusted for inflation. Under this trend, funding for corporate-run, residential group homes, in particular, has risen steeply while funding for state-operated group homes and developmental centers continues to be stagnant or cut.

 dds-budget-chart2-fy-12-18

For Fiscal 2018, the Arc requested a $20.7 million increase in funding for privatized group homes (line item 5920-2000), and the governor obliged with an even higher $59.9 million, or 5.4 percent, increase, as noted.*  The ADDP, as noted, wanted a $176 million increase in that line item.

In the privatized community day line item (5920-2025, not shown on the chart), both the Arc and ADDP asked for a $40.2 million increase, and the governor responded with a proposed $13.6 million increase.

At the same time, both the Arc budget request for Fiscal 2018 and the  ADDP request effectively asked for zero increases in funding for the state-run DDS accounts. Those include accounts funding state-operated group homes, developmental centers, and departmental service coordinators. (The column labeled “Request” in the linked Arc budget document is left blank for those state-run program line items. The ADDP budget request simply doesn’t include those line items.)

The governor appears to have more than obliged the provider organizations regarding those state-run accounts as well. His Fiscal 2018 budget proposes a $1.8 million cut in the state-operated group home account (5920-2010). This amounts to a $6.9 million cut when adjusted for inflation.

In addition, the governor is proposing a  $2.4 million, or 2.2%, cut in the state-run developmental centers line item. (5930-1000). That’s a $4.9 million cut when adjusted for inflation.

And the governor is proposing a cut of $96,000 in the DDS administration account (5911-1003). That is a $1.7 million cut when adjusted for inflation, and means a likely cut in funding for critically important DDS service coordinators, whose salaries are funded under the administrative account.

It’s well known that the Arc and the ADDP oppose developmental centers because those two organizations oppose congregate care for the developmentally disabled and support only care in group homes or smaller settings. What may not be as well known is that the Arc and ADDP appear to have no interest in more funding for service coordinators or state-run group homes, in particular.

Late last month, Baker submitted his proposed Fiscal 2018 budget to the Legislature’s House Ways and Means Committee. In a letter to Representative Brian Dempsey, the chair of the budget panel, COFAR requested that, at the very least, the committee approve a plan to redirect some of the governor’s proposed increase in the corporate residential account to the state-operated group home, facilities, and service coordinator accounts.

(We would note that we have been urging this kind of redirection of funding for the past two years, and neither the governor’s office nor the Legislature are listening.)

Service coordinators

Service coordinators are DDS employees who help ensure that clients throughout the DDS system receive the services to which they are entitled under their care plans. In recent years, funding for service coordinator salaries has failed to keep up with their growing caseloads.

A reason for the Arc’s apparent disinterest in service coordinators may be that the organization has long promoted privatized “support brokers,” in which the Arc is financially invested.

The job descriptions of the Arc support brokers and the DDS service coordinators appear to be quite similar. The Arc notes on its website that “consumers or families hire a support broker to help them find appropriate services and supports to thrive in their community.”

The job description of DDS service coordinators states that they are responsible for  “arranging and organizing DDS-funded and generic support services in response to individual’s needs.”

COFAR Executive Director Colleen M. Lutkevich terms the DDS service coordinators “the eyes and ears that make sure that the providers who report to DDS are doing their best for the residents in a large, confusing system. Without them, the provider agencies have total control, and families do not even have a phone number or a name to call outside the provider they are dealing with.”

Underfunding of state-operated group homes

In addition to provider-run group homes, DDS maintains a network of state-run group homes that are staffed by departmental employees. State workers receive better training on average than do workers in corporate provider-run residences, and have lower turnover and higher pay and benefits.

State-operated group homes provide a critically important alternative to the largely privatized residential care system that DDS oversees. But we have found that DDS routinely fails to offer state-operated homes as an option for people waiting for residential care, and instead directs those people only to openings in the privatized residences.

To be clear, we do not object to a highlight of Governor Baker’s budget — his proposed $16.7 million increase in the  DDS Turning 22 account, which would amount to a 222% increase in that account over the current year appropriation.  Turning 22 funds services for a growing number of developmentally disabled persons who leave special education programs at the age of 22 and become eligible for adult services from DDS. This account has been historically underfunded.

But our concern is that as they enter the DDS system, those 22-year-olds will be placed almost exclusively in privatized programs. An important choice is being taken away from them and their families.

As we noted in our letter to the House Ways and Means chair, the pattern of privatization in Massachusetts state government has become almost permanently established even though the benefits of privatization are highly debatable.  Many questions have been raised about the privatization of prisons  and the privatization of education in Massachusetts and elsewhere around the country.

The privatization of human services may be the biggest prize of all for government-funded contractors.  We need to preserve what’s left of state-run services.

(*The $59.9 million figure for the governor’s proposed increase in the corporate provider line item is based on numbers provided by the nonpartisan Massachusetts Budget and Policy Center. The Arc’s budget document claims the governor’s requested increase was $46.7 million.)

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Baker administration concedes some congregate care for the developmentally disabled is good, but will still largely prohibit it

August 4, 2016 Leave a comment

In responses to comments made to a federally required plan for community-based care of the developmentally disabled, the Baker administration is conceding that not all congregate care is bad or should be banned.

Yet, the administration’s draft Statewide Transition Plan (STP) still appears to prohibit or restrict most new group homes from housing more than five residents; and it would apparently restrict funding for most other congregate settings, such as farm-based residential programs.  The administration is currently asking for further comments on the draft STP.

The STP is a requirement of the federal Centers for Medicare and Medicaid Services (CMS), which issued a new regulation in 2014 governing community-based care receiving Medicaid funding. The CMS regulation is intended to reduce reliance on congregate care, but Massachusetts originally appeared to go even further than the CMS regulation in banning congregate care almost entirely.

Along with hundreds of people and other organizations, COFAR submitted comments in late 2014 to the original draft of the STP.  It appears that like us, most of the commenters to that original plan were concerned that the state was going too far in banning virtually all possible forms of congregate care.

As we noted in our comments to the administration in 2014, the Department of Developmental Services appeared to be proposing a ban on new and potentially existing residential settings such as farmsteads, residential schools or settings that are part of residential schools, settings “that congregate a large number of people with disabilities for significant shared programming and staff,” and even new group homes with more than five residents.   Not even CMS was advocating a complete ban on all of those residential options.

Now, after having received those critical comments, the state seems to be willing to continue to fund some forms of congregate care.

In its response to the comments, the Baker administration made the following statement:

The state acknowledges that CMS… has indicated that ‘it is not the intent of this rule (CMS’s 2014 regulation) to prohibit congregate settings from being considered home and community-based settings.’ The …characteristics of any setting (location, geography, physical characteristic and size) are not necessarily determinative of whether a provider can achieve compliance… (my emphasis).

Despite that apparent concession, the Baker administration’s STP states that DDS has determined that 14 corporate providers operating 57 group home sites are not complying with the new CMS regulation.  This lack of compliance is because these residences apparently have “institutional qualities,” either because they house more than five residents or not enough services are provided by community-based providers.

The STP also states that some of these homes may have provided insufficient staff training in “person-centered planning.”  (We have voiced concerns that while person-centered planning is touted as giving developmentally disabled individuals more control over the services they receive and how they pay for them, the process appears to put control over an individual’s funds into the hands of private companies.)

By the way, the administration stated in its responses to the STP comments that the state’s Building Code limits group home capacity to five residents.  Our reading of the applicable Building Code regulation, however, is that it does not set a 5-person limit on all group homes, but rather specifies only that DDS group homes with five residents or less must be classified as single-family or two-family homes (see amendments to 780 CMR. 310.2).

These are, moreover, group homes, and not developmental centers, that DDS has identified as being too institutional.  This raises a concern for us that the federal government and the state are pushing for ever smaller and more dispersed residential settings — a process that diverts more and more taxpayer money appropriated for the developmentally disabled into a grossly unregulated corporate-run service system.

While it appears under the STP as though DDS will allow these 14 providers some leeway in complying with the provisions in the plan, the providers will have to make a range of changes, including potentially relocating their residents to smaller residences.  The STP indicated that this may result in an unspecified additional cost to the state.

The STP also noted that the Association of Developmental Disabilities Providers (ADDP), an influential lobbying organization for state-funded DDS providers, will be in charge of providing assistance to the providers in complying with the plan.

Anti-eviction agreements

One piece of potential good news is that the administration’s STP states that DDS will require providers to sign contractual agreements with residents of group homes that prevents arbitrary and capricious evictions.  This is apparently another CMS requirement.  This could address one of the key problems we’ve identified with provider-operated group homes, which is that they can currently evict residents with minimal notice, particularly in cases in which guardians or other advocates are seen as being pushy or meddlesome.

A portion of the STP also deals with non-residential care.  What stood out was that DDS found that 170 community-based day programs operated by 98 providers did not meet CMS standards due to inadequate daily activities, staffing, and funding.

Administration still steeped in community-first ideology

Despite the apparent softening of its anti-congregate-care position, the administration’s STP still appears to be ideologically opposed to anything not considered sufficiently community-integrated, and therefore too institutional. In its response to some of the comments to the STP, the administration stated that it is its belief that:

all individuals, regardless of their level of impairment, can benefit from integration and access to the community. (my emphasis)

The administration made this statement after noting that it recognized that “…individuals with significant disabilities live in some settings that presumptively do not satisfy the (CMS) community regulation.”  The administration stated that it is not its intent “to force individuals to move from settings or to take away needed services and supports.”  But that is exactly what DDS did when it closed or downsized four developmental centers in Massachusetts, starting in 2008.

So, in effect, while the administration says in the STP that it recognizes that some individuals live in non-community-based settings, it still maintains that all developmentally disabled individuals, regardless of their level of disability, could benefit from being moved to the community system.  It is a community system, however, in which at least some of the services and supports available in “institutional” settings would most probably be taken away.

On the one hand, the administration acknowledges that it is not the size of a care setting that determines whether it is institutional or not, but rather the services provided and the commitment of the staff.  Yet the administration consistently overlooks the fact that just because a care setting is small, that doesn’t guarantee it will be integrated into the community.

In a perceptive post, Jill Escher, president of The Autism Society San Francisco Bay Area, notes that the real purpose of the new CMS regulation is not to eliminate institutional care, but rather “to put the brakes on the creation of new residences and programs that cater specifically to adults with autism and other intellectual and developmental disabilities.”

In other words, programs for the developmentally disabled cost money, and the CMS is looking to save money by simply eliminating those services.

Here’s Escher’s very apt description of the impact of the CMS regulation and the transition plans of states like Massachusetts:

Though the (CMS) rules talk of “person-centered” and “outcome-oriented” services, where individuals are not “isolated” and are free from coercion and restraint, in Orwellian doublespeak fashion, civil rights and liberation is not the true endgame here. The overwhelming goal is to restrict out-of-home options.

In practice the rules mean if you’re sitting at your parents’ home doing nothing, or in your own apartment without on-site staff, that’s “community integration.” Meanwhile if you prefer a well staffed adult autism program or housing complex, where you are cared for and safe, engaged in the community, and in the company of your friends who may have similar disabilities, your choice is ironically deemed “isolating” by bureaucrats. And therefore subject to the CMS axe.

Jill Barker, who writes The DD News Blog, adds:

Congregate care, providing services to people with disabilities in group settings, is one of many practical solutions to the need for long-term care. It allows for the sharing of resources and lessening of feelings of isolation. It should not be ruled out as an option, although that appears to be the intent of many advocacy organizations.

In my opinion, there is also a quiet war on families who are offered no other alternative but to keep their adult child with DD at home with services that may not be adequate to provide the family with the relief they need and a good quality of life for their disabled family member for the long term.

Limited federal IG probe faults state’s reporting on group home abuse in MA

July 20, 2016 2 comments

In one of the few investigations of the community-based system of care for the developmentally disabled, the Inspector General for the U.S. Department of Health and Human Services last week disclosed critical shortcomings in the process in Massachusetts for reporting abuse and neglect.

A report issued by the IG found that incidents of abuse and neglect in group homes were not regularly reported to investigators.  The report noted that of a sample of 587 visits by group home residents to hospital emergency rooms, the group homes had failed to report 88 –or 15 percent — of them to the Department of Developmental Services.

In addition, DDS itself and the group homes did not report 58 percent of 175 “critical incidents” to the Disabled Persons Protection Commission, as required by state regulations.  And 29 percent of incident reports sampled by the IG did not contain “action steps” to protect individuals involved from future injury.

COFAR has long maintained that the state’s privatized group home system is inadequately overseen and prone to abuse and neglect due to relatively low levels of pay and training, and high turnover among staff.   Even the providers themselves acknowledge those problems.  Yet the state routinely relicenses  the providers to operate homes even though there are clear gaps in the prevention and reporting of abuse and neglect.

The Massachusetts report is the third report issued by the HHS IG thus far on abuse and neglect in individual states.  Last year, the IG issued a report on New York State; and in May, the agency issued a report on Connecticut.

U.S. Senator Chris Murphy of Connecticut, who originally requested in 2013 that the HHS IG investigate abuse and neglect in group homes around the country, commented this week on the findings, at least concerning Connecticut and Massachusetts.  In a statement issued on Monday, Murphy said he will introduce federal legislation to require reporting of incidents of abuse and neglect, and training of direct care staff in group homes.

Murphy’s office did not respond to a request from COFAR earlier this year for comment on the New York report. As we noted in February, the New York report contained no recommendations and no critical findings, and was only six pages long.

The Massachusetts report, in contrast, was 33 pages long.  Like the Massachusetts report, the Connecticut report, which was issued in May, found numerous failures to report abuse and neglect to state authorities.

Despite its thoroughness in examining the incident reporting process in Massachusetts, we believe even the IG’s Massachusetts report was limited in its scope. We think it could have gone much further in investigating the major problems posed by the privatized residential system.

In requesting the IG investigation, Murphy’s 2013 letter to Daniel Levinson, the HHS IG, emphasized the role of privatization in causing “a race to he bottom in our health care system. Privatization of care may mean lower costs but without the proper oversight and requirements for well-trained staff,” Murphy stated.

In limiting its report primarily to findings of failures to report instances of abuse and neglect, the IG has focused on a small piece of the overall problem.  The larger issue concerns not only the level of abuse and neglect in the privatized system, but the overall adequacy of care that exists in it.

The HHS IG  report did not examine the impact of privatization on the quality of care in the group home system, and did not specify whether the residents whose emergency room visits the IG sampled lived in privatized or state-run group homes.

We have found that the state’s ongoing privatization of residential services has resulted in a corporate, bottom-line approach to care of the disabled. Moreover, DDS has insisted on steering people waiting for residential care to the privatized group home system, all the while failing to provide state-run homes as an option.

The case of Kathleen Murphy is an example.  As we have previously reported, Kathleen’s sister and guardian, Patricia Murphy, and members of her family began trying to move Kathleen from a corporate provider-operated group home to a state-operated residence in 1998.  DDS continually declined to move her, despite a federal law requiring that the Department provide disabled individuals with a choice among all available alternatives for residential care.

Patricia Murphy finally filed a federal lawsuit in 2013, which resulted in the placement of Kathleen in a state-operated residence.  (By way of disclosure, Kathleen Murphy is represented in the case by Tom Frain, who is COFAR’s Board president.)

Patricia Murphy contends that Kathleen suffered nearly 16 years of physical abuse, sexual assaults, emotional torment, and medical neglect in provider-operated group homes.  She says her sister was also grossly over-drugged in those facilities, and her clothing, jewelry and spending money were stolen.

The state-operated residence to which Kathleen was finally placed is “the best thing that ever happened to her,” Patricia said.  She said that since moving to the state-operated group home, Kathleen has lost 45 pounds, is being fed nutritious food, is off all psychotropic drugs, and her blood pressure is under control.

Yet these experiences as reported by families are apparently of little interest to the federal government, in particular, which, like the state, is committed to further privatization of residential services for the developmentally disabled.  While the U.S. Department of Justice has placed a major emphasis in recent years on investigating and closing down state-operated facilities and services for the disabled, there have been few if any comprehensive investigations of the privatized group home system.

Unfortunately, the Massachusetts Legislature has adopted a look-the-other-way attitude regarding these problems.  As far as we know, no legislative committee has scheduled any hearings in recent memory on the problem of abuse and neglect in the DDS system.

Both the Legislature and the Baker administration have continued a policy of boosting funding for further privatization of services while slowly starving the much more responsive state-run group home system of budgetary support.

We hope that the IG report, limited as it was, spurs the Legislature to finally pay attention to the big issues that surround the care of persons with developmental disabilities in Massachusetts. Those issues concern privatization and its impact on abuse, neglect, and the quality of care in general.

Gov. Baker’s FY ’17 budget continues race to the bottom in care of the developmentally disabled

February 2, 2016 8 comments

In his proposed Fiscal 2017 budget, which he filed last week, Governor Baker is continuing to boost funding for privatized care for the developmentally disabled at the expense of state-run care.

This continues a pattern that has crossed party lines — the Patrick administration did the same thing — of reducing both the available choices and the quality of care for people with developmental disabilities.

Privatization of human services reduces the quality of care because it reduces money spent on direct-care staffing.  Direct care workers of corporate providers get lower pay and less benefits than their counterparts in state-run facilities.

Privatization reduces choice in care because it results in the closures of state-run facilities and consequently eliminates them as an option for people who might want that higher level of staffing and care.

Of course, as the linked New York Times article points out, privatizing services doesn’t necessarily result in long-term fiscal savings for state taxpayers.  The money saved in hiring lower-paid workers is usually offset by higher costs such as unemployment insurance and by Medicaid and other public assistance for workers earning low incomes.  We also believe any savings in privatization is also offset by the often inordinately high compensation provided to executives of the corporate providers.

Yet it appears the Baker administration still believes it will save money in using lower-paid direct-care workers.  That seems to be the case with the administration’s proposal to privatize mental health services in southeastern Massachusetts.  In that case, the administration appears to be implicitly backing a reduction in wages to direct-care workers after an initial contract period.

Governor’s FY ’17 DDS budget numbers

Here are some of the key numbers in Baker’s Fiscal 2017 budget proposal for the Department of Developmental Services.  Note: All numbers below are adjusted for inflation using the Mass. Budget and Policy Center’s CPI index numbers.  The CPI numbers show inflation running at about 1.8 percent for Fiscal 2016.

We believe that in order to gauge the level of the administration’s commitment to privatization of services for the developmentally disabled, it’s necessary to compare what has happened and is happening to the corporate provider line item with what happens to other DDS line items.

Here’s how it looks graphically, with more detailed explanation below.

DDS budget chart FY 17

Corporate provider residential line item (5920-2000): This is the main DDS line item supporting privatized services.  It has become by far the largest line item in the DDS budget — funding under this line item exceeded $1 billion for the first time in Fiscal 2015.

The governor’s Fiscal 2017 budget would increase the corporate provider line item by $5.9 million, or 0.5 percent, over current-year funding.  If the governor’s Fiscal 2017 budget is adopted, this line item will have been increased by $309 million, or 38.6 percent, since Fiscal 2012.

Chapter 257 Reserve 1599-6903: This is a reserve fund created to last year to provide even more funding for corporate providers.   The governor’s budget would increase this fund by $5.7 million or 18.6 percent, to $36.2 million.

The following three line items are key indicators of the administration’s commitment to state-run services.

State-run developmental centers budget line item (5930-1000):  The governor’s Fiscal 2017 budget would cut this line item by $3.18 million or 2.8 percent from the current-year appropriation.  If the governor’s proposal for Fiscal 2017 is adopted, this line item will have been cut by $41.6 million, or 27.5 percent, since Fiscal 2012.

That $41.6 million cut reflects the closures since 2008 of three of six remaining developmental centers.

State-operated Residential line item (5920-2010): The governor’s Fiscal 2017 budget would cut this line item by $212,800, or 0.1 percent, from current-year funding.  (In nominal dollars, the governor has proposed a $3.7 million increase in this line item, but it’s a cut when adjusted for inflation.)  If the governor’s Fiscal 2017 budget is adopted, this line item will have been increased by $42.8 million, or 24.4 percent, since Fiscal 2012.

That 24.4 percent increase since Fiscal 2012 for state-operated residential care can be compared to the 38.6 percent increase in the corporate provider residential line item. Moreover, that funding increase in the state-operated residential line item is actually a result of the underlying dynamic of privatization.

As we have noted before, there has been a net increase of 40 state-run group homes over the total number in 2008; but the state has closed state-run residences even as it has built new ones.  It appears the new state-run residences and the additional funding for those residences have been intended to accommodate the more than 250 people who have been transferred since 2008 from the closed developmental centers and the closed state-run homes.  Those are apparently the only people who have been admitted to the new state-operated homes.

As we’ve also pointed out, the administration does not even offer state-run residential facilities as options for developmentally disabled people waiting for residential care.  Privatized, corporate-run care has become the only “choice” available those people despite the fact that the federal Medicaid Law requires that developmentally disabled individuals and their guardians be informed of the available “feasible alternatives”  for care.

DDS administration (5911-1003): In addition to administrative functions, this line item funds DDS service coordinators, who are responsible for ensuring that clients throughout the system are receiving services to which they are entitled.  The service coordinators have seen their caseloads rise dramatically in recent years, but funding under this line item has never kept up with the caseload increases.

The governor’s Fiscal 2017 budget would cut the DDS administrative line item by $977,000, or 1.4 percent.  (In nominal dollars, the governor is proposing a slight increase in this line item, but it’s a cut when adjusted for inflation.)  Since Fiscal 2012, this line item will have been increased by 8.1 percent if the governor’s Fiscal 2017 budget is approved.

Other line items that demonstrate the administration’s commitment to increased DDS privatization include the following:

Community day and work 5920-2025: The governor’s budget would increase this line item by $5.6 million or 3 percent.  Since Fiscal 2012, this line item will have been increased by 45 percent if the governor’s Fiscal 2017 budget is approved. It appears that some of the increase proposed for this line item reflects the transfers of people from sheltered workshops to day programs.

Employment pilot program 5920-2026: The governor’s Fiscal 2017 budget would increase this line item by $4.6 million, which is a major increase, given that the current year appropriation is just over $3 million. That proposed 150 percent increase reflects the transition from sheltered workshops to supposed integrated employment.

The pattern of privatization in Massachusetts state government has become almost permanently established even though the benefits of privatization are highly debatable.  Many questions have been raised about the privatization of prisons  and the privatization of education in Massachusetts and elsewhere around the country.  The privatization of human services may be the biggest prize of all for government-funded contractors.  We need to preserve what’s left of state-run services.

Few people moving from sheltered workshops to “integrated” jobs

January 20, 2016 10 comments

While the Baker administration appears to be moving ahead with a policy of closing all remaining sheltered workshops for developmentally disabled persons in Massachusetts, records show that relatively few people so far have been transferred from the workshops to the “integrated employment settings” that are supposed to replace them.

Confirming our concerns, the data from the Department of Developmental Services show that most of those people have been transferred to community-based day programs funded by DDS or MassHealth.

This has financially benefited corporate DDS providers that run the day programs and that have been among the most vocal proponents of shutting down the sheltered workshops. In what we consider to be an example of the inappropriate influence of private interests in DDS policy, two of those provider organizations actually helped draft a key DDS document that called for the workshop closures.

According to DDS records, the number of participants in sheltered workshops dropped by 1,166 between August 2014 and August 2015 — a 61 percent reduction from the 1,913 people who had been in those programs.  The number of sheltered workshop providers dropped from 39 to 14.

In that same period, the number of developmentally disabled persons in corporate-run, community-based day programs increased by 1,116, or 27 percent.

In contrast to the increase in day program use, the number of developmentally disabled people in “integrated employment” settings increased from August 2014 to 2015 by only 337, or about 6 percent.  DDS said it had no records on the number of integrated workplaces that exist in Massachusetts.

Community-based day programs actually cost considerably more to run than do sheltered workshops, according to an expert in the field.

A DDS document in November 2013, titled “Blueprint for Success,” stated that it was the department’s goal to close sheltered workshops to new participants as of January 2014 and to close all remaining workshops as of June 30, 2015.  The closure of all of the workshops has not yet occurred, but it appears to be likely to happen despite protective language placed in the state budget for the workshops.

The title page of the Blueprint states that the document was prepared by DDS and by the Massachusetts Association for Developmental Disabilities Providers (ADDP) and the Arc of Massachusetts.  Both the ADDP and the Arc are largely supported by DDS-funded providers, which have benefited from higher DDS funding for the day programs to which most of the former sheltered workshop participants have been transferred.

The Blueprint called for a total of $26.7 million in state funding over a four-year period for the transition from sheltered workshops to mainstream work settings.  But the document did not offer specifics as to how those mainstream jobs would be found.

2014 Blueprint Progress Report, drafted by DDS and the ADDP, stated that $3 million allotted in the Fiscal Year 2015 budget for the transition from the sheltered workshops fell short of $5.5 million that DDS and the corporate providers had requested.  Nevertheless, the report stated that 31 of 39 provider agencies would receive funding to transfer participants out of the workshops.

It now appears most of the funding has gone toward community-based day programs. The expert we talked to suggested that it would have been more effective had the funding been earmarked for subsidies for employers for hiring developmentally disabled workers.

Sheltered workshops provide developmentally disabled persons with a range of assembly jobs and other types of work, usually for a small wage.  But the programs have become targets of a political ideology  that holds that any type of congregate care setting is institutional in nature and therefore bad for those involved.  Sheltered workshops allegedly “segregate” developmentally disabled people from their peers in the wider community or in the mainstream workforce.

“Integrated individual employment” is defined by DDS in a 2010 policy directive as “taking place in a workplace in the community where the majority of individuals do not have disabilities.”  In addition, the policy directive states that the “optimal employment status is earning the prevailing wage.”

Many families of the sheltered workshop participants have countered that those programs are fully integrated into the surrounding communities and provide the participants with meaningful activities and valuable skills.  Those families have also raised concerns that there are relatively few integrated or mainstream workforce jobs available for people with developmental disabilities; and that absent a sufficient number of such jobs, former sheltered workshop participants  are likely to be transferred permanently to community-based day programs that do not offer the same activities or skills as the workshops did.

The contrast between the percentages of people who have been transferred to day programs and those placed in integrated employment is not alluded to in a September 2015 progress report submitted by DDS to the Legislature’s House and Senate Ways and Means Committees and to the Children, Families, and Persons with Disabilities Committee.  The data noted above on the numbers of people in sheltered workshops and other programs in 2014 and 2015 can be found in tables in the report; but there was no analysis in the report of the data and no conclusions drawn based on that data.

In that five-page report, DDS Commissioner Elin Howe stated that DDS was offering training and consultation services to day program providers on the “delivery of quality, inclusive community based services…”  Howe also said DDS was working “to assure that all individuals have access to and integration in the community…”

But Howe did not explain in the report how or when that access to integration in the community would be achieved by DDS.  Howe’s report also provided no data or information on the types of services offered in community by day program providers or how successful those programs might have been.

The DDS’s 2010 policy directive similarly did not contain a plan for placing former sheltered workshop participants in mainstream jobs; but the policy directive did take a strong ideological stance against the workshops, going as far as to state that mainstream employment had been shown to be “a viable option… even for those individuals with the most significant level of disability…”  No evidence or source was cited for that statement.

The disappearance of sheltered workshops appears to be yet another example of the erosion of cost-effective care for the developmentally disabled due to the influence of corporate interests that stand to benefit financially from it. At the very least, this case shows that a public agency should not develop policies jointly with the corporate contractors that it funds.

Andy and Stan McDonald gain a small victory in a system that has been pitted against them

November 3, 2015 1 comment

In a Middlesex Probate Court hearing last Monday (October 26), Andy McDonald, an intellectually disabled man, finally got the opportunity to tell a judge his long-sought wish — that he be allowed to visit his aging parents in their Sherborn home.

As we have reported, Andy, who is 48 and lives in a group home in Westborough, has been denied permission since 1996 to visit his parents. Andy’s father, Stan, is now 80.  In a ruling in 2006,  former Probate Judge Edward Rockett concluded that Andy was sexually dangerous and should never be allowed to return to his childhood home.

Not only were Andy’s parents never to discuss with Andy the prospect of his ever visiting his home, but Rockett ruled that Stan must personally tell his son, in the presence of clinicians, that he would never be allowed to go home again. McDonald said he has refused to say something like that to Andy.

I will discuss Rockett’s ruling more fully below.  We have noted previously that a key claim made in the ruling — that Andy was arrested in 1990 for sexually assaulting three young girls — is untrue.  Andy has never been charged with a sexual offense.

Yet Rockett’s decision, and the claim in it that Andy was arrested for sexual assault, is the basis for the Department of Developmental Services’ longstanding position that Andy should never be allowed to return to Sherborn, and that the matter of visits there should never be discussed with him.

Rockett’s ruling

We think it is important to expose what we see are misstatements and a lack of a factual basis in Judge Rockett’s ruling. Rockett decision, and an appeals court ruling upholding it, were repeatedly cited during a break in the court hearing last week by a DDS attorney as reasons to oppose ever lifting the ban on home visits.

Stan was even told he would be in contempt of court if he mentioned to the judge his own wish that Andy be allowed supervised visits home. As it turned out however, it was Andy himself who brought up the subject of home visits before the judge.

Beyond that, there is a larger reason for examining Rockett’s decision, we think.  Someday, Andy will be on his own; and if the conclusions in Rockett’s decision are never challenged, he may be locked up somewhere for good.  One attorney contacted by Stan about his case termed Rockett’s decision “devastating.”

It therefore seemed somewhat extraordinary that there were no objections last week when Andy asked to speak to Middlesex Probate Judge Megan Christopher during the October 26 hearing.  When Christopher assented to his request to speak, Andy politely asked  that he be granted a supervised visit home “for a couple of hours.”

Judge Christopher didn’t flatly deny Andy’s request, but said she would schedule a new trial date in which that issue may be considered.  She told Andy that what he wanted “was  complicated and required more looking into.”  She pointed out that “it’s not always possible to have everything you want.  You understand that,” she added.

The October 26 probate hearing was held to consider the appointment of attorney Marie Dunn as Andy’s new guardian, replacing Dennis Yeaw, an attorney who had opposed home visits for Andy, also citing Rockett’s decision.  In 1986, Stan and his former wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him.  Stan has been unsuccessful since that time in regaining his guardianship, even though his former wife, local legislators, and other supporters have publicly expressed support for that.

Andy’s arrest

Andy was arrested in Sherborn in May of 1990 for threatening an unidentified person during a telephone call, according to the district court record.  The nature of the threats was not disclosed.  In July of that year, he was charged with disturbing the peace in downtown Sherborn, according to a police department report. In that incident, he allegedly followed a young woman and threatened to kill her father. That same day, he was charged with assault after he punched Ellen, his stepmother.  Stan and Ellen say the punch was accidental.

Andy has not exhibited any significant behavioral problems in close to a decade and has been taken on community outings to many places other than his home without any behavioral incidents, according to Stan and to his yearly clinical care plans.  He is described in his latest clinical care plan as “kind and friendly to others,” and as “a polite man.”

According to the plan, Andy enjoys going to the library, going out to dinner, and seeing his father’s jazz band play.  He regularly goes into the community to shop for program supplies and volunteers at Meals on Wheels.

Yet, Andy has in the past told clinicians that he has had sexual fantasies about children; and that, combined with the mistaken claim that he was arrested for sexual offenses in Sherborn in 1990, led to Rockett’s lifetime ban on him from visits home.  Stan maintains that the ban on visits has caused Andy emotional harm.  His latest clinical care plan states that Andy’s rapid speech and eating habits are related to anxiety, although the plan attributes that anxiety to a fear of death and bees.

One-sided view

Rockett’s decision appears to take a selective view of the history of the case.

In his ruling banning Andy from Sherborn for life, Rockett concluded that Stan “should never be considered for appointment as guardian of his son,” and that Stan “lacks common sense and has poor judgment skills.”  Rockett stated that Stan and other family members, who he didn’t name, “wish to usurp the authority over the program and introduce their own ideas for clinical treatment for Andrew…”

Rockett further banned Stan from ever directly contacting any doctor, clinician, or service provider providing care to Andy.

Rockett’s decision, however, said nothing about Stan’s long-time personal advocacy on behalf of Andy, in particular his successful fight to discontinue the use on Andy of Stelazine, an anti-psychotic drug, which appears to have caused Andy’s disruptive behaviors prior to 2006. Rockett also did not mention the fact that clinicians had misdiagnosed Andy in the early 1990’s as mentally ill when, in fact, he is intellectually disabled, and that, as a result, Andy was inappropriately placed in Westborough State Hospital, a facility in which he was first put on Stelazine.

The Stelazine caused Andy to develop Tardive Dyskinesia, a disorder  resulting in involuntary, repetitive body movements.  Because the court-appointed guardians did little or nothing to address that problem, Stan said he personally got a court order and paid for an independent evaluation of Andy’s medications. This resulted in discontinuing the Stelazine and replacement of the prescribing doctor.

Among those who have written DDS in support of Stan’s bid for guardianship since that time has been State Representative David Linsky, who earlier this year was joined by State Senator Richard Ross in calling for a new, independent clinical evaluation of Andy.

John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, wrote to DDS in 2013 to say that he had frequently observed visits to Andy by Stan and Ellen, and that “Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”

But Rockett didn’t see it that way. In his 2006 decision, Rockett accused Stan of failing to cooperate with Andy’s court-appointed guardians and with clinicians, and stated that Stan failed to “recognize the seriousness of Andrew’s fantasies.” He also implied in his decision that Stan had a drinking problem.  He offered no evidence for that, however.

Failure to specify prohibited materials

In support of the former accusation regarding the seriousness of Andy’s fantasies, Rockett stated that “Andrew uses pictures of children as sexual stimulants,” and that Stan had provided Andy on a number of occasions with “prohibited materials.”  But Rockett did not state what those prohibited materials were.

According to Stan and Ellen, the prohibited materials consisted of the following items: A piece of beach glass (which Westborough State Hospital considered dangerous), a sparkler that was lit on a birthday cake, a drawing of a baby from a Family Circus cartoon, and a photo of Andy’s niece and nephew.  Ellen said a poster-sized version of the photo of Andy’s niece and nephew had been on the wall in his room in his group home with the staff’s full knowledge.  “The poster seemed to us to indicate explicit authorization for Andy to have pictures of his niece and nephew,” Ellen said. “Stan did not show or give anything to Andy believing Andy would use them for any inappropriate purpose.”

Regarding the drinking issue, Rockett wrote that “Andrew has stated that his father’s drinking bothered him.” Rockett offered no further explanation of that claim, other than two follow-up statements concerning Stan’s visits to his son. One statement was that “Mr. Burch (the clinical director of Andy’s group home) had instructed Stanley McDonald not to drink during the visits.” The next line stated: “They (Stan, Andy, and Burch) went to a restaurant and Stanley McDonald immediately ordered wine.  Andrew became very agitated and went to the restroom, where Mr. Burch had to quiet him down.”

In our view Rockett’s statements imply, without actually stating it, that Stan brought alcohol to Andy’s group home, and that Andy was bothered because Stan must have been drinking excessively during the visits.  In fact, here is Stan’s wife, Ellen’s, explanation of the drinking issue:
Stan has never brought alcohol to Andy’s (group home) program.  Andy does not like to be around Stan when he is drinking.  Andy worries about the effects on Stan of alcohol and tobacco.  He doesn’t want Stan to drink or smoke.  He is very influenced by ads he sees on TV about the danger of drinking and driving.  After that incident where Stan ordered a glass of wine in a restaurant he never again ordered an alcoholic beverage in Andy’s presence – until once very recently, when Andy didn’t express any objection.  Stan does drink at Primavera (in Millis) while he is playing (in his Blue Horizon Jazz Band), and nobody has raised this as an issue – neither Andy nor staff who accompany him.  Andy loves to be at Primavera when Stan is playing.  He goes from table to table and talks with all of the guests and band members.  Many have known him since he was a child.  Nineteen years ago when Andy last visited at home Stan did not have a drink while Andy was there.  Stan honors Andy’s wish and orders iced tea when we go out to supper.  Stan smokes in Andy’s presence but tries to minimize it.  It’s a tough habit for him to give up.

No support for statements about alleged dangerousness

Rockett’s decision also included a lengthy discussion of Andy’s alleged sexual dangerousness, starting with the mistaken claim discussed above that Andy was arrested in 1990 for sexual assault. Rockett referred three times to the arrest, and, in one instance, stated that Andy had “stalked the three neighborhood children.”  As noted, there is no evidence in police or court records that anyone was sexually assaulted in those incidents, that any young children were involved, or that Andy stalked anyone.

(Even the appeals court, which upheld Rockett’s decision in 2009, stated in a footnote that “some of the fact findings adopted by the judge (Rockett) were not supported by the evidence…” The appeals court footnote specifically stated with regard to Rockett’s claims about the arrest for sexual assault and stalking three girls, “the specific facts (of the incidents in Sherborn) and the charges are not clear from the record.”)

Rockett also claimed in his decision that Andy had confessed to having “bizarre sexual fantasies” about children; yet Rockett noted that Andy “will always say what people want to hear.”

In addition, Rockett included what appears to be an unsupported and inflammatory statement by Burch that Andy was “the most dangerous person he has ever treated.”

But there is no evidence cited or presented in Rockett’s decision that Andy ever sexually assaulted anyone. Rockett stated, for instance, that in the 1990’s, when he was first admitted to his group home, Andy “attempted to attack female staff” in both his residential and day programs.  But Rockett provided no details about those alleged attempted assaults.

Rockett’s decision also included two accounts about Andy’s alleged fantasies and about Andy engaging in masturbation; but while the accounts were graphic, nothing that Rockett described could be said to constitute crimes or prove that Andy was dangerous.

Ellen and Stan maintained that at least some of the statements given by clinicians regarding Andy’s alleged sexual fantasies may have stemmed from statements Andy made while participating in a group therapy program in the 1990’s in Andy’s group home, which is run by Community Resources for Justice.  Participants were reportedly encouraged to discuss their sexual fantasies in the sessions.

“As I recall we were told at least some of the group members had actually offended,” Ellen said. “We weren’t told details of these sessions.”

Questions remain

Marie Dunn, the new guardian appointed last week for Andy, was not present at the October 26 court hearing.  But both Andy’s court-appointed attorney and the DDS attorney encouraged Stan and Ellen to meet with Dunn.  Stan is hopeful that Dunn will agree to a new, independent evaluation of Andy, and that she will support supervised home visits for him.

We hope things will finally move in a positive direction for Stan, Ellen, and Andy.  We think it was a good sign that Judge Christopher allowed Andy to state his wish in open court to visit home.  We also think it is a positive thing that Andy finally has a new guardian.

We strongly support at least a co-guardianship for Stan; and we hope the day comes soon when Andy can have supervised visits home once again, and that common sense will finally prevail in this case.

Federal government reviewing group home data in MA and two other states

May 11, 2015 3 comments

The Inspector General in the U.S. Department of Health and Human Services has spent the past two years conducting a review of data on abuse and neglect in privatized group homes in three states, including Massachusetts.

In an August 21, 2013 letter written to U.S. Senator Chris Murphy of Connecticut, HHS Inspector General Daniel Levinson said his office had begun to examine data on admissions of persons from group homes and “nursing facilities” to hospital emergency rooms in Massachusetts, Connecticut and New York.

We obtained Levinson’s letter from the IG’s Freedom of Information Act Division.  The letter promised to share the results of the IG’s findings with Senator Murphy’s office and left open the possibility of expanding the review.  But the letter provided no details on how the review might be expanded.

Senator Murphy, who requested in March 2013 that the IG investigate group homes for people with developmental disabilities, has not responded to numerous requests from us for comment on the IG’s review.

It is not clear when the IG’s examination will be completed.

Despite what appear to be significant limitations in the scope of the analysis, the IG’s review appears to constitute one of the few instances in which the federal government has investigated the privatized group home system of care in the U.S.  In contrast to that relative free ride given to the group home system, the federal government has filed dozens of lawsuits in recent years alleging substandard care in state-run, congregate-care facilities around the country.

There has been mounting evidence that abuse and neglect has been a continuing and growing problem in community-based, group homes.  The IG investigation was requested by Murphy in the wake of a series of articles in The Hartford Courant that documented dozens of deaths, injuries, and other problems stemming from inadequate care and supervision in group homes in Connecticut.

Murphy asked the HHS IG to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.”

In his August 2013 letter in response to Murphy’s request, Levinson stated that for Connecticut, Massachusetts, and New York, “we are analyzing data to identify instances when Medicaid beneficiaries were transferred from group homes or nursing facilities to hospitals for emergency treatment.  We are analyzing data by facility to determine whether certain facilities have excessive rates relative to those of their peers.”

Due to the way states collect the data, the IG’s analysis would include all Medicaid patients and not only those with developmental disabilities, Levinson said.

Given the vagueness of Levinson’s description of his office’s review, we have a number of questions about it. Levinson’s letter, for instance, didn’t specify what he meant by “nursing facilities,” and didn’t indicate which “peers” the emergency hospital treatment rates are being compared to. Are the group homes and nursing facilities being compared to developmental centers, for instance? It’s also not clear what the data will mean if it lumps together people with and without developmental disabilities.

Moreover, it is not clear whether the IG’s review has included data on actual deaths in group homes, which is what Murphy specifically asked the IG to examine, or whether the review has included differences in mortality rates of persons transferred from state-run to privately run care.  A number of studies have shown increases in mortality rates among those transferred individuals.

The VOR, a national advocacy organization for the developmentally disabled, pointed out in recent testimony to a congressional subcommittee that higher mortality rates have been documented in Virginia, Nebraska, Tennessee, and Georgia in the wake of the DOJ’s deinstitutionalization settlements.

Based on Levinson’s letter, the IG’s review also doesn’t appear to have covered issues such as the quality of care in general in group homes, and it does not appear to be concerned with financial aspects of privatized care.  All of those things are long overdue for investigations at both the federal and state levels of government.  In the meantime, the federal IG’s investigation appears to be at least a step in the right direction.