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Confusion reigns over employment of the developmentally disabled in Massachusetts

When it comes to the crucial issue of employment of people with developmental disabilities in Massachusetts, the policies of both the federal government and the Baker administration appear to be unclear, confusing, and to contain a number of contradictions.

Yet, neither the Baker administration nor the Massachusetts Legislature, in particular, seem to be showing much interest in clearing things up.

Consider these facts:

  • Although the Patrick and Baker administrations stated that they were closing all sheltered workshops in Massachusetts in order to place developmentally disabled people in so-called “integrated” or mainstream work, those mainstream jobs have proven to be difficult for many, if not most, of those people to find.
  • An unknown number of former sheltered workshop participants, some of whom do not want mainstream work,  have been left without work of any kind in their Department of Developmental Services-funded day programs.
  • It is unclear what work arrangements are considered by both the federal and state governments to be legal. In one case, DDS has resorted to a creative, if jerry-rigged arrangement under which a developmentally disabled man has been placed on the staff of his day program so that he can continue to do piecework there in compliance with federal rules.

Barbara Govoni (right) with state Senator Joan Lovely, Senate chair of the Children, Families and Persons with Disabilities Committee, this week. The Committee did not approve a bill Govoni proposed that would ensure work opportunities for  her son and other developmentally disabled persons. But Lovely says she wants to work with Govoni on the issue.

Let’s look at each of these issues a little more closely:

Integrated work is apparently still unavailable for many who want it in the mainstream workforce

In 2014, the administration of then Governor Deval Patrick began closing sheltered workshops that provided developmentally disabled persons with piecework activities because those facilities supposedly segregated those persons from their non-disabled peers and paid them less than minimum wage. The Baker administration followed that same policy, ultimately closing all remaining workshops as of the fall of 2016.

The plan of both administrations was to provide training to those former workshop participants and place them in mainstream workforce settings along with supports that would help them to function in those settings.

We expressed concerns at the time, however, that the workshop closure policy was being pursued without knowing, among other things, whether sufficient jobs existed in the private sector for all of those former workshop participants and others who want jobs.  We also expressed concern that the Legislature wasn’t following through with funding needed for training.

Since 2014, data appear to have borne out our concerns.

DDS data provided to us last month show that despite the workshop closures, smaller and smaller numbers of people have actually entered the integrated or mainstream workforce in Massachusetts since Fiscal 2016.  During that fiscal year, a high of 509 clients in the DDS system newly started working in mainstream jobs.  That number dropped to 127 clients entering integrated employment during Fiscal 2017 and a net increase of 98 clients during Fiscal 2018.

We are assuming that demand for these mainstream jobs remains high, possibly in the thousands. That there was a net increase of less than 100 developmentally disabled persons in integrated employment in Fiscal 2018 appears to show that the administration has been unable to find jobs for people who want them.

Fiscal years 2015 and 2016 were apparently the years in which most of the population of the sheltered workshops left those programs and in which most of the increases in integrated employment programs took place. The problem is that the numbers of clients entering integrated employment in those years were much smaller than the numbers entering DDS-funded day programs.

Overall, the DDS day program population increased by 81% from Fiscal 2014 through 2018 while integrated job placements increased by only 19%. The chart below reflects this trend and illustrates the fact that the total day program population in the DDS system has caught up with and even surpassed the total number of departmental clients in integrated employment since Fiscal 2014.

Chart on DDS integrated employment vs. day program population

Source: DDS

When we asked DDS for any records indicating whether the Department is having a problem providing suitable work opportunities for those who want them, DDS referred us to two policy documents dated 2010 and 2013. But those documents obviously do not provide any information about the situation today.

One of those policy documents is the Department’s 2010 “Employment First” policy statement, which called for “integrated employment as a goal for all” DDS clients. The policy statement also called for a “consistent message” and an “infrastructure including prioritizing and directing of resources, that supports this effort.” (my emphasis)

To date, however, neither a consistent message nor an adequate infrastructure appear to exist to support that goal of universal integrated employment.

The DDS’s 2013 document, titled “Blueprint for Success,” stated that it was the Department’s goal to close all remaining sheltered workshops as of June 30, 2015.  (The last workshops were closed a little more than a year later.)

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.

Some DDS Employment First website links don’t work

In response to our request for documents and information, DDS also referred us last month to its Employment First website.  It isn’t apparent, however, that the website contains any information that indicates whether or not it is difficult for developmentally disabled persons to find mainstream employment.

In one case in which I clicked on the website and then went to the “Career Planning” section under the “Resource Library,” a link to a “Career Planning Guide” took me to an error page. Another link to a “Guide to Person-Centered Planning for Job Seekers” took me to a page with generic advice on seeking employment, but no information on current job prospects for people with developmental disabilities in Massachusetts.

Under a link called “Program Development and Management,” I clicked on another link labeled “Ensuring Excellence in Community Based Day Supports,” and got another error page message.

Barbara Govoni and Patty Garrity, two of the more active family members of former sheltered workshop residents, both said they had never been referred to the website by DDS.

Legislative committee kills work opportunities bill

Last year, state Representative Brian Ashe of Longmeadow filed a work opportunity bill (H. 4541) at the request of Govoni, the mother of Danny Morin, a former sheltered workshop participant. The bill would have required optional work activities in DDS-funded day programs for up to four hours a day.

Govoni is concerned that Danny has been provided with few activities that are meaningful to him after his workshop closed in 2016, and misses the steady work that the workshop provided. She terms this lack of available work opportunities for Danny and others a human rights issue.

But Govoni’s bill was referred to the Children, Families, and Persons with Disabilities Committee, which effectively killed the measure in June by sending it to a study. Earlier this week, Govoni and I met with state Senator Joan Lovely, the committee’s Senate chair, to discuss the bill among other DDS issues.

Lovely said the employment bill was filed late in the two-year legislative session. She noted there was little time to analyze the implications of the bill, so the committee decided to send it to a study. The problem with that is that no one in the Legislature actually does such studies. Sending a bill to a study is a euphemistic expression used for killing a bill.

But Lovely said the committee is concerned about the work opportunity issue, and said the committee has been in touch with DDS about it. One proposal being discussed is to hire an ombudsman in the Department who would help individuals and families locate existing day programs that offer work opportunities.

Another proposal under consideration is to establish new work opportunities programs in existing day programs without making such work opportunities a legislative requirement of DDS.

But it isn’t clear that DDS really is working to establish those programs or whether the Department even considers work activities in day programs to be legal.

A staff member for Representative Ashe said she was told by DDS officials that the Department is essentially hamstrung by federal rules that prevent DDS day programs from offering any work activities because such activities can only be offered in “integrated” settings.

DDS tries creative approach to comply with federal requirements

Despite that, we have heard of recent cases in which arrangements have been made to provide work activities in DDS day programs. Patty Garrity’s bother, Mark, is one of those cases.

As we reported last year, Mark, like Danny Morin, was bored in his day program after it had ceased operating as a sheltered workshop. He wasn’t interested in the classes on painting, cooking, or money management that had replaced the piecework he had enjoyed doing.

In March of 2017, Mark’s day program found paper shredding work for him that DDS determined was in compliance with federal rules.

Ashe’s aide queried DDS about Mark’s case and was told that in order to allow Mark to do the paper shredding work under the new federal rules, the provider agency running his day program has actually placed him on its staff and is paying him minimum wage. As a result, Mark is now considered to be working in an integrated setting.

Ashe’s aide told us that Mark’s work arrangement is considered a “unique circumstance.”

Federal rules regarding integrated employment are unclear

The problem with unique arrangements such as Mark’s, however, is that they don’t necessarily solve problems involving larger groups of people. And it may even be questionable whether Mark’s arrangement was actually necessary.

Despite what DDS told Ashe’s legislative aide, it does not appear clear that the federal rules strictly forbid work activities in day programs such as Mark’s.

In an informational bulletin issued in 2011, the federal Centers for Medicare and Medicaid Services (CMS) stated that federal Medicaid funding will not cover “vocational services delivered in facility based or sheltered work settings, where individuals are supervised for the primary purpose of producing goods or performing services.”

That would appear to preclude at least some work activities in DDS day programs. But it seems possible that what the CMS bulletin refers to as “pre-vocational services” do allow for at least certain work opportunities in those settings, although the guidance, as usual, is vague. It also isn’t clear which types of work activities DDS recognizes as pre-vocational services and which it considers vocational.

The CMS bulletin offers a rather vague and clunky definition of pre-vocational services as:

…services that provide learning and work experiences, including volunteer work, where the individual can develop general, non-job-task-specific strengths and skills that contribute to employability in paid employment in integrated community settings. (My emphasis).

The bulletin does state that persons doing pre-vocational activities can be paid for those activities “in accordance with applicable Federal laws and regulations.”

The bulletin implies that these pre-vocational work opportunities can be provided in “fixed-site facilities,” which we think would include DDS day programs, although this again is not clear. Also, the bulletin states that these work opportunities must occur “over a defined period of time,” which implies that the individuals are ultimately expected, as the bulletin says, to be placed in permanent integrated employment. Once again, the “defined period of time” isn’t defined!

It’s also unclear to us what the CMS bulletin means in stating (above) that while pre-vocational services can include “work experiences,” they must provide the person with “non-job-task-specific strengths and skills.” Does that mean that the individual can do work but can’t do specific tasks?

It seems that the paper shredding activity that Mark Garrity is doing could be considered a “work experience.”

As a result, it seems possible that when Govoni’s bill is refiled, as we hope it will be in the next legislative session in January, the bill should specify that all DDS day programs be required to offer pre-vocational activities to anyone who requests that.

When Govoni and I met with Senator Lovely, Lovely agreed that the current rules governing work opportunities are confusing and need to be clarified.

The federal and state models are ‘one size fits all’

 The CMS bulletin recognizes that work is vitally important to people with developmental disabilities in the same way it is important to non-disabled persons. As the bulletin notes:

Work is a fundamental part of adult life for people with and without disabilities. It provides a sense of purpose, shaping who we are and how we fit into our community.

Yet, after that acknowledgement, the CMS bulletin appears willing to ensure that fundamental part of life only for those who agree to work in the mainstream workforce. The bulletin states:

…Because (work) is so essential to people’s economic self sufficiency, as well as self esteem and well being, people with disabilities and older adults with chronic conditions who want to work should be provided the opportunity and support to work competitively within the general workforce in their pursuit of health, wealth and happiness.

Neither the federal government nor the Baker administration in Massachusetts appear to recognize that at least some persons with the most profound levels of disability are not able to participate in the mainstream workforce.

The CMS bulletin states the following: 

All individuals, regardless of disability and age, can work – and work optimally with opportunity, training, and support that build on each person’s strengths and interests. Individually tailored and preference based job development, training, and support should recognize each person’s employability and potential contributions to the labor market.`(my emphasis)

The DDS Employment First policy referred to above appears to go even further in that regard, stating that:

It has now been clearly demonstrated that individuals who were previously considered unemployable in integrated community settings can work successfully. Even for those individuals with the most significant level of disability, through careful job matching and support design, employment has been shown to be a viable option. (my emphasis)

These statements are unsupported by the evidence. That is probably why neither statement provides any evidence to support its claims.

Recently, however, the federal government proposed changes at least to rules that prevent developmentally disabled persons from working for less than the minimum wage.

We hope to work with the Baker administration and the Legislature to find ways to penetrate and clear up this dense thicket of confusion and contradictions that has grown up in the past several years over the vital issue of work for the developmentally disabled.

We hope Govoni’s work opportunity bill is enacted in the next legislative session. In the meantime, legislators, advocates, and policymakers need to get together to clarify and agree on what can and should be done.

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