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Gifts of the Sheltered Workshop

October 14, 2018 Leave a comment

Guest post 

Note: This post was written and sent to us from Thomas Spellman and Dona Palmer of Delavan, WI.  Although all sheltered workshops were closed in Massachusetts as of 2016, we are still pushing for a resumption of work opportunities for clients of the Department of Developmental Services in this state.

As a result, we think Thomas Spellman’s and Dona Palmer’s points about sheltered workshops remain applicable to Massachusetts, just as they are applicable to work opportunities programs provided to developmentally disabled people across the country. 
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Introduction

Before we present the gifts of the “Sheltered Workshop,” let us take a step back and look at the big picture. What we see among Sheltered Workshop participants is a continuum, from mild to severe brain impairment.

While these individuals are all disabled, their NEEDS differ significantly.  A major contributing factor is behavior. While behavior is not a disability in and of itself, it can be a complicating factor in the employment of a disabled individual and in their life in general.

While the ability to “work” varies significantly among persons with brain impairment, behavioral issues and physical disability, those persons must do work that is meaningful to them. Whether it is just a smile or it is working for General Motors, the work must be meaningful to the person doing it.

As we all know, each person with a disability (or their guardian) has the right to choose where they “work” and where they live. This is a foundation of the Americans with Disability Act (ADA).

While the right of each person to choose is important, it is EQUALLY IMPORTANT that a variety of work experiences be available that address the varied needs of all of those individuals who are disabled. Sheltered Workshops MUST BE AVAILABLE to those with disability(ies), cognitive impairment, physical challenges and behavioral issues.

sheltered workshop photo

A sheltered workshop in New Jersey, which, unlike Massachusetts, has so far kept its sheltered workshops open

We know of the benefits of a Sheltered Workshop because our daughter Rosa has been working at VIP Service, a Sheltered Workshop in Elkhorn, Wisconsin, for fifteen years.

We use the term “Sheltered Workshop,” which in the past was accepted as a very good description of a safe place for people with disabilities to work. As we know, today it clearly is used by some in a derogatory manner, as in “You work at a Sheltered Workshop, and not in the community!! Poor you!”

Gifts of the Sheltered Workshop

First and foremost is the gift that the Sheltered Workshop exists!! (See note above about Massachusetts.) Without its existence, NONE of the rest of the Gifts WILL EVER BE REALIZED by the tens of thousands of disabled individuals who realize some or all of the Gifts every day!!!

Second is that there is WORK to do. While WORK is a human experience, and there is much written about WORK by others, we know from our own experience that WORK is fulfilling. Rosa has said that about the WORK that she has done at VIP.

While a person’s production rate may seem important, the more important issue is accuracy in order for WORK to be of economic value. Is the product that is being completed done exactly the way that it needs to be done? That is a challenge, and in some cases a major challenge to providing work to those who are disabled.

Third is the 1986 amendment to the Fair Labor Act of 1938, which provides for a “Special Minimum Wage” for persons with disabilities.

This is NOT a “Sub-minimum Wage. Sub-minimum Wage is a term that was coined by the National Disability Rights Network to negatively describe the “special minimum wage” as described by Section 14 (c)(A)(5) of the Fair Labor Standards Act of 1938 as amended. 

New terms such as prorated wages or commensurate wages are used, but it is the CONCEPT and not the name that is critical to the existence of Sheltered Workshops.

The logic underlying the “Special Minimum Wage” is simple and clear. If Rosa produced half what a full-time worker would produce, then she will receive half of the financial benefit for doing that specific job. It may need to be audited from time to time, BUT THERE IS NOTHING THE MATTER WITH the concept.

If we want significant meaningful WORK for people who have mild to moderate brain impairments and or physical impairments, then we MUST HAVE the Special Minimum Wage. If the Special Minimum Wage is ELIMINATED,  Rosa and tens of thousands of others whose disabilities limit their ability to work WILL HAVE NO WORK AT ALL.

Fourth is The VARIETY of JOBS that an individual can experience. We have only recently realized the importance of this. Rosa has learned over 100 jobs in the fifteen years that she has worked at VIP. Each of those jobs required her to trust Pam, her supervisor; to listen to Pam, to comprehend what Pam is saying, and when necessary ask Pam for help on how to do something.

Having been with Pam for 15 years, Rosa is proficient at each of those tasks. The hardest thing for her was asking for help. The VARIETY of job experiences has allowed her to grow to become more independent.

It needs to be noted that while some individuals may be able to do a two or three-step assembly job, they may not be able to collate a ten-page letter. Some may be able to put labels correctly on a bottle while others cannot. This variety of JOBS is very, very important to the growth and health of all those who work at a Sheltered Workshop.

Fifth is that besides the variety of jobs, there is the allowance to work at different speeds. It makes no difference in a Sheltered Workshop if an assembly job takes a minute or ten minutes. To know that what you are doing, and the speed that you are doing it, is OK is very important. It is one of those things that one might not see as a Gift, but surely it is.

Sixth is the Stability of the Sheltered Workshop. The schedule stays the same. The workers are the same. There is a place to go to WORK and be with FRIENDS. There is a stability of workers and supervisors. For Rosa and, we assume, many others, KNOWING what tomorrow will bring is VERY, VERY important in their lives. She “implodes” emotionally when the “activities” (as she calls them) of the day are not known.

For Parents and Guardians, KNOWING that the Sheltered Workshop WILL BE THERE WHEN THEY are NO LONGER CAPABLE OF caring for their loved one, is of even GREATER IMPORTANCE! It is to know that the Social Contract to take care of a son or daughter who is disabled WILL BE HONORED by the community of the next generation.

Seventh is Family. For many individuals with disabilities, their personal living situation can be disrupted by a change of ownership of the residential facility that they call home. The “home” can be too expensive or it can be too big or not big enough, and of course it can close. When an individual is forced to change households, they lose that “family,” and so the stability of the people at a Sheltered Workshop becomes their family. As I was preparing this, I realized that Rosa will grieve our deaths with her Sheltered Workshop family. 

Eighth is Safety.  Both physical and personal safety are priorities at Sheltered Workshops. That extra caution is reassuring to both the workers and their parents and/or their guardians.

Ninth is Friends and Community. What is special about the Sheltered Workshop is that with time, true friendships do develop with both the other workers as well as with the supervisors.

Fifteen years ago, Rosa bonded with Pam, a PAID STAFF member at VIP Services. Rosa has shared with Pam the births of Pam’s girls, hearing the baby stories, and now watching the girls show their goats at the County Fair.

And now Pam has accepted the role of guardian if both of us become unable to be Rosa’s guardian.  It is despicable to use the term PAID STAFF in a derogatory manner, which some disability rights individuals do. They imply that because someone is a paid staff member, there is not a real bond.

What is CRITICAL TO UNDERSTAND HERE is that our personal individual associations are part of what defines us as INDIVIDUAL HUMAN BEINGS. These relationships, in large part, will be with OTHERS much like ourselves. These relationships are our very essence. There must be an ACKNOWLEDGEMENT OF THIS MOST BASIC HUMAN FACT.

Tenth is that transportation is made available. A few Sheltered Workshop participants may be able to drive, but the vast majority of workers at Sheltered Workshops need a ride to work. In those cities with bus service and a Sheltered Workshop on the bus line, a few more individuals are able to catch the bus to get to work, but there still are a significant number, who without affordable transportation being provided, will NOT BE ABLE TO WORK.

Eleventh is the Staff.  Yes, the staff of the Sheltered Workshop is a gift. Some disparagingly call them PAID STAFF,  but they are a group of highly trained individuals giving of themselves in many ways that would not be easy for many of us to deal with on a daily basis. To imply that these tens of thousands of staff members can be replaced in the for-profit workforce now being called “community integrated employment” is beyond absurd.

Twelfth is that Sheltered Workshops allow participants to take extended vacation time, in turn allowing parents who are retired to take longer vacations without endangering their son’s or daughter’s job when they return. Will a Walmart allow a 6-week vacation? That’s the amount of time our family spends in Florida in March and April of each year.

Thirteenth is that Sheltered Workshops are also a backup for those persons who are having a hard time at their public employment place of work. It may be for a few weeks or it may be a permanent change, but it is critical that the Workshops be there. The alternative to not being successful at Public Employment Work CANNOT BE SITTING AT HOME WATCHING TV!!

Thomas Spellman and Dona Palmer can be contacted at tmspell@execpc.com

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Advocacy group appears to say persons with even the most profound intellectual disability may not need guardians

October 9, 2018 5 comments

We are questioning statements from a leading organization seeking to reduce or eliminate guardianships that imply that a guardian may not be necessary even for some of the lowest functioning people with intellectual or developmental disabilities.

In an email to me on September 27, Dari Pogach, a staff attorney with the American Bar Association’s Commission on Law and Aging, stated that decisions to appoint or terminate guardians “should not be based on diagnosis or condition.”

That statement appears to imply that an individual’s diagnosed level of disability is irrelevant in determining whether that person needs a guardian; and therefore, even the most profoundly cognitively impaired persons may not need guardians.

The ABA Commission is working with the National Center on Law and Elder Rights (NCLER) to replace guardianships with a more informal process called Supported Decision Making (SDM).

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas. The network supporters can include family members, but they can also include corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

COFAR is concerned that SDM, which is part of a growing effort to reduce or eliminate guardianships, could marginalize family members in decisions made about the care of their loved ones with developmental disabilities. That’s because it is primarily family members who seek to become guardians of incapacitated persons after they reach the legal age of adulthood at 18.

The VOR, a national advocacy organization for people with developmental disabilities, adds that SDM “could weaken protections for those who are the most vulnerable.”

Pogach’s full statement to me was as follows:

The decision to appoint a guardian in the first place, or terminate the guardianship, should not be based on diagnosis or condition, but rather on the person’s ability to make their own decisions, with or without support and to be safe from abuse, neglect and exploitation (my emphasis).

The problem with this statement, in our view, is that it raises a troubling question. If clinicians are not required or allowed to consider an individual’s clinical level of disability, how can they determine what a person’s ability is to make their own decisions?  It would seem that in that case, that determination would become totally arbitrary.

Pogach’s statement draws no distinction between levels of intellectual or developmental disability, and appears to imply further that people even with the most severe or profound levels of such disabilities may be capable of making their own decisions about life choices and care without the need of a guardian.

Pogach was a panelist in an NCLER-sponsored webinar on August 22 that discussed efforts by the organization to terminate guardianships in a number of instances involving persons who were elderly or had developmental disabilities. As a member of the webinar audience, I submitted a written comment and a question to the webinar panelists.  Pogach’s September 27 email was in response to my comment and question.

In my comment to the webinar panel, I stated that COFAR was concerned that SDM could “marginalize family members who we have found often make the best guardians for persons with intellectual and developmental disabilities.”

I also noted that severe and profound levels of intellectual and developmental disability present very different issues from moderate levels of those conditions, and we did not necessarily see those distinctions made by the webinar panelists.

Finally, I posed the question whether any protections were possible under SDM to ensure that a family member would not be “outvoted” on an SDM team by providers, clinicians and others who may not have the same degree of interest in the wellbeing of the disabled individual.

In her September 27 email in response, Pogach included the following statement:

The purpose of SDM is not to marginalize family members. SDM is predicated on the person being at the center of the decision-making process, and that includes choosing who will act as a (network) supporter. It is also means the person can choose to agree or not to agree with everyone in their supported decision-making network, including providers, clinicians, and family members. (my emphasis)

This response raises further questions and concerns for us. It appears to imply that not only can an individual with an intellectual or developmental disability, no matter how severe or profound, make their own decisions about their care, they can overrule family members and others on their SDM team or network.

While that viewpoint might appear to be simply meaningless if it were to be applied to extremely low-functioning persons, it is nevertheless concerning because it further implies that family members, in particular, should not be making decisions about the care of their developmentally disabled loved ones.

Pogach’s statement added that:

When supported decision-making is working, the person does not follow the majority vote of the (SDM network) supporters. The role of the supporters is to listen, help the person understand their options, and help the person to make their own decision. (my emphasis)

As noted, this viewpoint appears to make no distinction between people who are elderly, for instance, and persons with developmental disabilities, or between high functioning individuals with developmental disabilities and those with severe or profound levels of disability.

The fact that support for SDM has become an ideological position is evident in a statement in a law journal article by Leslie Salzman, a prominent SDM proponent:

Virtually everyone has the ability to participate in the decisions affecting his or her life, with the possible exceptions of persons who are comatose or in a persistent vegetative state. (my emphasis)

For Salzman, it’s apparently more likely than not that even a person in a persistently unconscious state can participate in making decisions about their care.

In an October 1 email in response to Pogach, I stated that we have seen instance after instance in which providers, clinicians, state agency managers, and other professionals have sided with each other and against family members in disputes over care of the individuals in question. The views and concerns of the family members are often dismissed or ignored in these cases, even though it is usually the family that knows the individual best. And, of course, family members are almost always the only people in this group with strong emotional bonds to the individual.

I also noted that the federal Developmental Disabilities Assistance and Bill of Rights Act (PL 106-402) states that “Individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive…” (my emphasis)

No distinction made between family members and professionals as guardians

While abuses in the guardianship system certainly occur, we think the potential for abuse is greater when professional guardians are involved than when family members are guardians. DDS pays attorneys and corporate entities to provide guardianship services to persons in cases in which family members are not available or have been removed as guardians.

As we have reported, there is relatively poor oversight of the professional guardianship system, at least in Massachusetts.

However, while SDM might be seen as a solution to the abuses committed by professional guardians, we are concerned that it may just shift the potential for exploitation from those professional guardians to corporate providers.

These state-funded providers have a direct financial stake in the care of persons with developmental disabilities. As such, including providers in an SDM network establishes a potential conflict of interest. Yet, the Center for Public Representation, a prominent SDM supporter, suggests that an SDM network can include “family members, co-workers, friends, and past or present providers.”

We have also reported that many of the same organizations that are advocating for SDM as an alternative to guardianships, including the Center for Public Representation, have also been involved in efforts to restrict congregate care and promote privatization of care for the developmentally disabled.

In sum, we do agree that significant reforms are needed in the guardianship/probate court system with respect to persons with intellectual and developmental disabilities. But we see that exploitation as being due primarily to rampant privatization and its connection to poor governmental oversight of professional guardians, and not to the appointment of family members as guardians.

SDM could be a viable component of the reform of the current system, provided there is an acknowledgement that SDM is not appropriate or suitable in every instance and that there are persons who simply cannot reliably make their own life choices and will ultimately need to have guardians. In cases in which SDM is determined to be an appropriate option, a way needs to be found to ensure that the family member or members on the SDM network remain the primary decision maker(s) on the network.

I noted to Pogach that the following are some of the additional reforms we have proposed to the system: 

  • Increased financial oversight of the corporate provider system and the DDS/probate guardianship system.
  • Passage of legislation requiring probate court judges to presume that family members are suitable guardians of persons with intellectual and developmental disabilities.
  • The provision of free legal assistance to family members and guardians who been barred from contact with their loved ones in the DDS system or who have otherwise faced retaliation from the Department or from providers.
  • The provision of free legal assistance to family members whose guardianships are challenged by DDS.
  • A policy statement by DDS that the Department will make every effort to comply with the Developmental Disabilities Assistance and Bill of Rights Act, and, in particular, the statement in the law that individuals with developmental disabilities and their families are the primary decision makers.

We’re anxious to hear back from Pogach on this. Unfortunately, the movement to reduce or eliminate guardianshps appears to be yet another area in which ideology is replacing both common sense and scientific, evidence-based policy making. We need to maintain those latter values.