(Almost) Everything You Need to Know About Sheltered Workshops: Part 2 of 2

Last Sunday, I posted Part 1 of “(Almost) Everything You Need to Know About Sheltered Workshops”. In it, we discussed why good people end up running bad services, how sub-minimum wage works, the problems with the sheltered workshop business model and how the National Council on Disability got involved in this issue.

At the end of our last post, the Council had just authorized a small fact-finding task force to learn about sheltered workshops and supported employment programs. Let’s pick up where we left off…

Why do families defend sheltered workshops?

In late 2011, the Council began a new initiative to understand the factors that drive sub-minimum wage for people with disabilities and come up with a plan to end it. We visited sheltered workshops and supported employment providers in seven states to inform ourselves on the issue before compiling recommendations.

To understand what NCD learned in those site visits, and the policy recommendations we put together for the Council’s later endorsement, it is important to spend some time highlighting where the opposition to sheltered workshop closure comes from. While some of it is driven by large provider agencies defending a business model that funds high salaries and subsidizes other less profitable programs, a lot of it is principled. There is considerable anxiety, particularly from families, about losing the functions that sheltered workshops currently serve. I’d like to highlight two reasons for this.

Sheltered Work as Respite Care and Day Habilitation

For a considerable number of families and a smaller number of providers we spoke to, the sheltered workshop was not viewed first and foremost as an employment program. For them, the workshop represented a place for people with disabilities to go to have something to do during the day, regardless of earnings. Many parents expressed concern that if their child did not have access to the sheltered workshop as a form of day activity, they would not be able to maintain their own employment. A common refrain was that if the sheltered workshop closed, “my son/daughter is going to end up spending their day on the couch watching television.”

Respite care, essentially giving a break to family members providing support to a relative with a disability, is a very real need for families whose adult relatives with developmental disabilities live at home, as is the case for almost three-fourths of adults with intellectual and developmental disabilities. There is a great deal of evidence supporting respite’s effectiveness in dramatically reducing institutionalization. One of the more recent studies I’m familiar with found that spending just $1,000 on respite care within the last two month reduced the risk of hospitalization for an autistic child by eight percent. (Of some interest to those reading this blog, the same study did not find access to behavioral interventions had any significant effect in reducing hospitalization.)

Access to respite historically took place out of home, and sometimes involved people with developmental disabilities being temporarily institutionalized, a model that certainly is not consistent with our values. In recent years, respite has shifted to a service that can be delivered anywhere, from in a person’s family home to at a volunteer or community activity of a person’s choosing. The point is to provide some form of meaningful engagement that can relieve family members of support work for a period of time. Many parent defenders of sheltered workshops look to them to accomplish this – in short, they want their children to have something to do during the day so they do not have to stay home to support them. This is not an unreasonable request.

Despite that, a sheltered workshop is by no means the only option for offering people with intellectual and developmental disabilities meaningful service-provision choices during the day. In the 1980s, then Assistant Secretary of Education of the time Madeline Will oversaw the creation of grants to states to establish and scale supported employment services. Supported employment brought supports like job coaching and other employment services to jobs in the community. Rather than workers with disabilities being forced to work in a segregated workplace in order to access employment supports, supported employment specializes in assisting those workers in finding a job consistent with their strengths, interests and priorities. Eventually, supported employment became a standard service option in most states’ Home and Community Based Services (HCBS) programs.

Supported employment includes not only assisting a person with a disability in locating a job, but also working with the job-seeker and the employer to craft job responsibilities that both match the worker’s strengths and the employer’s needs. The typical supported employment process begins with a “discovery” period, whereby a job-seeker with a disability is exposed to multiple different workplaces to help identify strengths and preferences, an particularly important process for job-seekers with communication disabilities.

Supported employment can also work with employers to adjust job descriptions and even craft new ones that meet both business needs and worker skill sets, far beyond the scope of what is legally required under the Americans with Disabilities Act. As of 2013, 113,271 workers with intellectual and developmental disabilities were receiving supported employment services on an ongoing basis to support their inclusion in the workforce.

The classic response to this is simple: not all disabled job-seekers will be able to find community employment. This is, of course, true. Significant disparities between state community employment rates of people with intellectual and developmental disabilities show that the right strategies can drastically boost the number of workers with significant disabilities who find community jobs. Still, just like the general workforce, not everyone will succeed. More sophisticated opponents of workshop closure have expressed concern that a person with a disability who leaves a workshop and does not find community employment will end up in a day habilitation center.

Day habilitation centers are segregated facilities where people with psychiatric and developmental disabilities often find themselves, performing make-work activities, arts and crafts and other things determined by a program schedule with little choice on the part of the people forced to spend their day accordingly. Day habilitation is not a new service – Medicaid funding to such settings predates sheltered workshops in many parts of the country. Medicaid got into the employment services business in the first place in large part to make sure that people with disabilities had an option other than day habilitation facilities.

Defaulting into day habilitation centers is a real concern for people with significant disabilities and their families. There is considerable evidence that facility-based day habilitation is worse than even a sheltered workshop environment, carrying with it all of the segregation without any form of training or economic renumeration. Still, this is not the only option for people with disabilities who do not find community employment. Using the same logic that brought employment services out of sheltered workshops and respite care out of institutions, more and more states are shifting how they deliver day habilitation services to more integrated models.

For example, the State of New Jersey sparked considerable outrage from provider organizations earlier this year when they proposed requiring that at least 75% of a person’s day habilitation services take place out of a separate facility. The state also proposed that there should “be no overall facility schedule for participants; each individual should have a unique schedule reflecting their interests and goals.” While the final plan backtracked somewhat from the proposal, the state still committed to moving day habilitation towards a more integrated model of services set by the preferences of the person being supported, outside of a segregated day activity center. Other states have been following similar paths. Vermont, which became the first state in the nation to eliminate the use of sheltered workshops in 2003, is one of a number of states to only deliver day habilitation within integrated settings. An integrated day habilitation program, where a person can choose how and where they spend their day, is a much better outcome than both a sheltered workshop or a segregated day activity center.

Many workers leaving sheltered workshops will find higher pay and better jobs in community employment. This may even be the case for most, depending on the workshop and the people served within it. Others may instead find that integrated day habilitation models offer a way to spend the day that is more meaningful and more integrated than a sheltered workshop environment. For much of the second group, sheltered work provided very little (if any) economic benefits. Someone compensated to the tune of a few cents an hour is hardly employed.

In these cases, sheltered work represented a form of backdoor respite care or day habilitation program: something for people to do during the day. And if the purpose of the workshop is not employment, the question that we have to ask is simple: can we not offer people better choices of how to spend their day than being shuttered in a facility pretending to perform manual labor? Of course we can, and in states across the country, we are. Lack of knowledge of those options represented one of the biggest sources of anxiety for families the Council met with in our travels.

Fear of Loss of Benefits

The second most common fear on the part of families (and even some people with disabilities) was the potential that workers may lose Medicaid benefits as a result of higher earnings outside of a sheltered workshop. Sheltered workshop employees are usually Supplemental Security Income (SSI) recipients, a program managed by the Social Security Administration that provides a small monthly check and immediate access to the Medicaid program for people with disabilities without sufficient work experience to qualify for Social Security Disability Insurance. While the higher paycheck that integrated work would bring could easily offset any reduction in SSI earnings, loss of access to Medicaid – the payer for the services that enable many people with disabilities to stay in the community with their basic needs met – would be catastrophic.

At one point, this would have been a very legitimate concern. Prior to 1980, SSI recipients who exceeded the income caps for the program could very easily get kicked off of Medicaid. In 1980, Congress passed the Social Security Disability Amendments Act of 1980, creating a three-year demonstration program allowing disabled workers to maintain access to Medicaid when their income rose above the level at which their SSI cash payments would be cut off. The program, referred to as 1619b for the legislative section that authorized it, allowed workers to maintain Medicaid eligibility if their continued employment would be seriously inhibited if they lost eligibility for Medicaid services. Congress later made this provision permanent in the 1986 Employment Opportunities for Disabled Americans Act, signed by President Reagan. The precise income level that workers with disabilities can earn up while maintaining Medicaid eligibility is set by a state by state formula calculated based on the average Medicaid expenses in that state, ranging from $27,244 in Alabama to $65,144 in Connecticut. Anywhere within that range is more than enough to allow the vast majority of those leaving sheltered workshops to maintain Medicaid access.

Other work incentive programs exist that allow people to maintain Medicaid benefits long after their earnings rise above the level at which SSI cash payments would be cut off. Section 201 of the Ticket to Work and Work Incentives Improvement Act allows states to set up a “Medicaid Buy-In program“, authorizing workers with disabilities to buy-in to Medicaid under terms set by the state. This represents a significant policy advance, as states can set income caps far higher than those under 1619b and can also waive the draconian asset cap for those using the Buy-In. To date, 46 states have made use of the Medicaid Buy-In. While each state sets different income, asset and other limits to the program, most states have left ample flexibility to allow workers with disabilities leaving workshops to stay on Medicaid.

During the Council’s site visits, we found limited knowledge of these work incentive programs, despite the fact the oldest of them were created over three decades ago. Many of the workshops had begun before the creation of 1619b – and some of the people with disabilities within them started working there almost as long ago. Even among younger workers and their family members, there was an understandable confusion as to how to navigate the fairly complex rules within the SSI program. Many people with disabilities had been sent into the workshop after achieving initial success in integrated employment because their family members were under the mistaken impression that their Medicaid coverage was at risk if they kept earning higher wages.

What practices promote better quality services?

I chose to focus on family member opposition in the previous section, but of course the Council spent time with many other stakeholders. People with disabilities expressed a consistent interest in earning more money and moving into more interesting community jobs, though many did express appreciation for the social opportunities even segregated programs afforded over what was available living at home. Service-providers usually defended whatever business they were in, whether that was sheltered workshops, supported employment or a mixture of both. This too was not shocking.

Of more interest were our conversations with state policymakers and advocates in the states who had succeeded in closing workshops while expanding supported employment. In these discussions, we learned a great deal about the strategies states could undertake to move away from the workshop model in a responsible way, without abandoning people with severe disabilities in the process.

Understanding Provider Business Models

Vermont was the state we learned the most about systemic change from. As mentioned earlier, the state had closed its last workshop in 2003, completing a process they had begun three years previously. Talking with leaders of the state Developmental Disability Service agency, I got a sense of the strong political will that was required to initiate that process in 2000. “We decided we would fund what we believed in and not fund what we did not,” commented one state leader, “That made the difference.”

To operationalize that belief required working with providers. Vermont had a number of advantages over other states, most notably the lack of a strong provider lobby to oppose the move. As a small state, policymakers also had the ability to build a relative consensus in support of shifting to integrated employment services. In a larger states like California or New York, the task of building political support for employment related systems change would likely be much harder.

Still, opposition to the transition existed. In early conversations with workshop leaders, one state policymaker recalled asking a simple question: “What if we just moved the folks who we can find jobs for in the community out of the workshop?” The answer came quickly from a workshop executive: the workshop’s economics simply would simply not work if that happened, because “with those people gone, no one would be available to do the work to meet our production contracts.”

This is a crucial point, and one that recalls the Congressional Research Service’s point about conflict of interest from Part 1. Sheltered workshop economics depend on their maintaining the employment of workers who likely could be supported to find jobs at or above minimum wage with community employers. Without that population, the workshop would not be economically viable and could not fulfill their contracts.

Because of that, one of the first and most important steps that states seeking to make progress on integrated employment need to undertake is a moratorium on new sheltered workshop placements. Without that, workshops will work aggressively to funnel capable workers with disabilities into their workforce, trading on the fears of family members and close relationships with schools and other public programs to do so. In short, as long as a sheltered workshop has an “open front door”, they will seek to replace those who leave with workers who might otherwise succeed in community employment.

It’s a rotten system, and one that should be shut down as soon as possible. Still, we quickly came to the conclusion that the focus of advocacy efforts to close workshops should work carefully to preserve the agencies running them. Many of the biggest workshop operators – Arc, Easter Seals and Goodwill affiliates, for example – were also the biggest supported employment providers in their area. Even where that was not the case, the agencies that operated workshops had often developed truly useful expertise in supporting people with significant disabilities in working productively.

With appropriate retraining and political will on the part of agency leaders, many workshops can and do “convert” to a supported employment model. To this day, the Vermont chapter of APSE – the country’s leading association of supported employment service-providers and supporters – runs an annual “Conversion Institute” devoted to teaching sheltered workshop leaders how to shift to a supported employment business model. If they can be convinced to evolve, today’s sheltered workshops represent vital elements of tomorrow’s supported employment provider network.

To encourage these transitions, states must clearly message their “seriousness” through a moratorium on new workshop placements and a set, time-bound schedule for phasing out the use of workshops for the existing population. State policymakers should not stop there, however. They have an even more powerful tool at their disposal: Medicaid reimbursement rates.

As discussed earlier, the majority of workshops and 14(c) certificate holders are also Medicaid providers. States can set Medicaid rates to sheltered workshop and supported employment providers to encourage the former to shift towards the latter. Some of this is as simple as paying more for supported employment and integrated employment outcomes than for sheltered workshops and segregated ones. (Several case studies on adjusting rates to incentivize employment are available here, for those with reason to delve into the details.)

A few states have adopted an even more innovative model, reimbursing employment providers for the number of hours that a worker with a disability works rather than the number of hours of job coaching or other services provided to them. The federal Center for Medicare and Medicaid Services will soon be issuing more detailed guidance on such “pay for performance” approaches.

Rate setting is a complex task, and generally benefits from some degree of external expertise. A number of national experts and technical assistance bodies are available to assist states in that process, like the State Employment Leadership Network of the National Association of State Directors of Developmental Disability Services or the Office of Disability Employment Policy’s Employment First State Leadership Mentoring Program, which pairs high-performing states with low-performing ones.

State policymakers need to ensure that service-providers are reimbursed at higher rates for people with more complex support needs. Many states use the Supports Intensity Scale for these kinds of determinations. At the same time, not all supported employment arrangements are created equal. Providers may feel an incentive to create small “mini-workshops” in the community through enclaves or mobile work crew models, unless their reimbursement models specifically incentivize supporting people to find employment most consistent with their interests on an individual basis (by paying higher rates for providers that help people with disabilities find jobs on an individual basis, instead of placing them in a small group cluster of jobs set aside for people with disabilities).

One of my Council colleagues represented a provider association in his home state of Massachusetts. Based on the experience he had during the site-visits, he began a dialogue with his state government and provider, family and self-advocate stakeholders on how to end the use of sheltered workshops in MA. The result – a blueprint on getting the State of Massachusetts out of the sheltered workshop business – ended up creating a concrete timetable for action in MA and serving as a rationale for the state legislature to commit bridge funding to help providers transition to supported employment models. In short, this has been done before – and we can do it again, where we choose to.

Get VR to the Table (Kicking and Screaming if Necessary)

States like Vermont and Washington, both of which had relatively high-performing employment service systems, also made sure to build strong collaborations with vocational rehabilitation (VR) agencies. VR, for all of its flaws, is the agency in state government with the most experience in disability employment and – your mileage will really vary on this, depending on the state you live in – the strongest relationships with the employer community. Technically, VR should be the first point of contact for helping people with disabilities find a job, while Medicaid funding can serve to sustain supported employment services after VR takes the initial steps of helping a person find a job and get acclimated to their workplace.

In practice, for people with intellectual and developmental disabilities, VR all too often deems them “unemployable”, leaving the Medicaid system responsible for paying for the full spectrum of employment services, from job search and discovery to ongoing service-provision. Medicaid is often ill-suited to this role, being predominantly a healthcare program, and the refusal of VR to serve this population results in Medicaid agencies needing to replicate skill sets that VR should already have. States are trying to address this by building memorandums of understanding between state Medicaid agencies – usually represented by the Developmental Disability operating division – and VR for the purpose of articulating how the two systems will work with each other and who will pay for what.

In the states we visited, however, VR and Medicaid still worked without consistent coordination – except where the VR agency had committed funding for joint infrastructure projects that gave it an incentive to serve people with intellectual and developmental disabilities, having already sunk money into preparing to do so. For example, Vermont prepared for its sheltered workshop closure by using VR funds to provide small grants to local providers to build supported employment programs.

There are a lot of things that VR and Medicaid can do together that would be nearly impossible for either to manage alone. In Vermont, we found that the use of VR funding for provider grants, combined with traditional Medicaid reimbursements to those providers, gave supported employment agencies the ability to “follow-along” with people who no longer required ongoing employment supports and be available in case people fell into crisis again. This would have been very hard to do with Medicaid funding alone, where expenditures usually have to be tracked to a specific type of service and beneficiary.

States need a clear set of “rules of the road” to allow both VR and Medicaid to invest in employment outcomes – and to allow both to take credit for successes and be held accountable for failures in the process. These things usually only develop when strong new leadership came into play, either from a Governor’s office or a particularly visionary VR or state Developmental Disability Services director. Without new leadership or external pressure, the existing VR system does not play well with others.

Leverage Federal Intervention

For the last fifteen years, advocacy efforts at securing more inclusive service options for people with disabilities have benefitted from a powerful tool. In 1999, the Supreme Court ruled in the landmark Olmstead v. L.C. case that people with disabilities had a right under the Americans with Disabilities Act to access any service that a state provided in a segregated setting in an integrated one as well. The Obama Administration’s Justice Department has been exceptional at enforcing Olmstead, bringing litigation that has forced states to not only close institutions but drastically expand community services across the country.

Though Olmstead was originally talked about mainly in the context of getting people residential supports out of institutions, the Justice Department has expanded the legal theory Olmstead uses to cover employment in recent years. In landmark cases in Oregon and Rhode Island, the Justice Department has required states to close new entrances into sheltered workshops, articulate a plan to shift people currently within them out of those settings and drastically expand available supported employment services.

Olmstead litigation is definitely “the stick” when it comes to incentivizing states to move away from sheltered workshops. But in my experience, it is one that is not always unwelcome. State leaders operate under any number of domestic political constraints. As such, they are often secretly quite pleased when the federal government relieves them of responsibility over deciding a difficult problem by requiring an otherwise politically difficult course of action.

While I wouldn’t go so far as to say that people in state government celebrate when the federal government sues them, it wouldn’t shock me if many are not altogether unhappy being forced to take steps they might otherwise find politically impossible. In our visit to Oregon, where the Justice Department’s litigation had recently begun, many of us sensed a cautious tenor of hope that the litigation would open up new doors to better services. In other states, fear of the Justice Department stepping in was prompting action that might otherwise not have been possible.

Engage with self-advocates and families

Change always has to be politically sustainable, particularly when it comes to disability service-provision. Wherever possible, provider associations should be worked with to convince them to cooperate with sheltered workshop conversion. Often, providers heavily resist change – in which case engaging with self-advocates and families becomes even more important.

Self-advocacy groups generally support these types of transitions – but may be too weak or dependent on provider organizations who provide financial or logistical support to effectively lobby. I’ve long argued that one of the most important things a state can do to prepare for progressive systems change is invest in the independence and self-sufficiency of a statewide self-advocacy association. By helping self-advocacy groups wean off the provider associations that often provide logistical support for meetings, transportation and other factors, self-advocates will have a much greater ability to pursue their own agenda to policymakers, even when it is at odds with providers.

Families will generally split on workshop closure. Some, particularly younger families, will be enthusiastically in favor of it. Others, particularly those whose children have been in sheltered workshops for a long time and remember the period before them, will be adamantly opposed. The states making the best progress on winning over families start from a position of understanding the major concerns that drive that opposition, as discussed earlier.

Clear and ongoing communication is necessary from the beginning of the process. Families need to hear clear solutions on what will prevent their loved one from being left without anything to do during the day if they don’t find a job. By beginning the process with a clearly articulated plan for expanding benefits planning, integrated day services and respite along with supported employment, many families can be won over. And of those that are not, frequently that transition will occur after the closure process has already taken place. In Vermont, we met with a mother who had led the charge against closing the state’s last workshop in 2003. Today, a decade later, her daughter was successful in supported employment, and her mother marveled at how experience in an integrated workplace had made her happier and more communicative.

Wherever possible, however, skeptics should be brought in to the process and allowed to brainstorm with state policymakers as to how to address their sincere concerns. Where opposition is implacable, state policymakers and advocates shouldn’t hesitate to go over the head’s of organizations that may be poorly representing their constituents and talk directly with individual family members and providers who are open to being convinced. Often, even opponents of workshop conversion will participate in a constructive planning process once it is clear that it will be taking place anyway.

Meaningful Integrated Day Services

Integrated day services, as discussed earlier, represent a crucial point on the employment and day services continuum. This is not just the case for people who don’t find integrated employment. Frequently, people with disabilities leaving workshops for supported employment find themselves working less than full time. Even if they are making more money working 5 hours a week at or above minimum wage than at 40 below minimum wage, many people still want additional service options to fill more of their day. If a person needs more intense support in order to access volunteer or recreational activities, it is important to have a funding stream that can provide that, lest someone be left without access to the community during the time they aren’t working. Integrated day habilitation can allow for that.

After the Council produced our initial report to Congress on phasing out sub-minimum wage, we began to work with congressional offices to craft legislation that would incentivize states to begin these transitions on their own. States respond to federal financial incentives, and we wanted to leverage the Medicaid program’s dollars to encourage states to pursue these transitions. The result, the recently introduced Transition to Independence Act (S. 1604), includes within it a strong definition of integrated day services:

(5) INTEGRATED DAY SERVICES.—The term “integrated day services” means services integrated in and supporting the full access of individuals with disabilities to the greater community to the same degree as individuals not receiving services that are provided consistent with all of the following:

(A) No overall facility or program schedule for the individuals receiving such services.

(B) Each individual receiving such services has a unique schedule reflecting the individual’s interests and goals.

(C) Activities take place on an individual basis or in small groups of individuals who choose to be served together.

(D) The majority of time spent receiving such services takes place within the broader community rather than within a single-site, fixed site, or center-based program for individuals with disabilities, regardless of the program size.

(E) The services are provided consistent with the requirements of section 441.710 of title 42, Code of Federal Regulations.

The purpose of this definition is to ensure that integrated day services are meaningfully different from the facility based programs of years past. This means more than just having activities take place outside of a fixed-site. It also means that people should be able to set their own schedules, pick their own activities and have the help necessary to make informed choices about those decisions. Too often, programs pass for “integrated” when they simply bus people with disabilities around to pre-arranged activities in clusters of individuals who didn’t choose to be served together. Integration isn’t just about location – it is first and foremost about choice, autonomy and control over one’s own life.

Will new Day and Employment Services support people with severe disabilities?

One more question often comes up during these transitions: will new day and employment services still serve the same people as the old system did? After all, if it is easier to support people with less complex needs in integrated settings, won’t providers focus most of their energy on the people who are easiest to assist?

This is a legitimate concern, albeit one that has been addressed successfully in other contexts. The closure of state institutions led to a similar conversation, with many opponents of de-institutionalization worried that it would benefit people with less complex needs while leaving those with more significant ones out in the cold. This did not occur, largely because of careful planning and investment that focused on ensuring the needs of all people with disabilities leaving institutions. A similar process can and is being implemented in states pursuing sheltered workshop closure and conversion.

In the de-institutionalization context, one of the most important tools for ensuring that people leaving institutions would be well served was the Money Follows the Person program. Created by the Deficit Reduction Act of 2005, Money Follows the Person authorized the federal government to cover 100% of the service costs for people with disabilities leaving institutions for the first year after they left an institutional environment. This ensured that people with disabilities leaving an institutional setting were at the front of the line for services, even if their state had a waiting list for those who had never been in an institutional setting.

While Congress has not (yet) created a Money Follows the Person for Integrated Employment, states can still imitate the policy implications of such an initiative, by requiring that those leaving sheltered workshops and facility-based day programs be put at the front of the line for new employment and day services. The NCD-inspired Transition to Independence Act would create similar incentives to Money Follows the Person at the federal level, by offering states bonus payments for shifting people in sheltered workshops and facility-based day habilitation programs to integrated employment and day services.

As mentioned earlier, many states use “tier” systems like the AAIDD Supports Intensity Scale to set payment rates higher for people with more complex needs. This is a critical component of making sure people with the most severe disabilities are not left behind. Case studies on this topic show that rates can be aligned not only with particular outcomes, but with the level of complexity of a person’s needs. Particular effort can be given to encourage certain provider agencies to specialize in serving people with “hard-to support” disabilities in integrated settings. Some states have even given start-up grants to provider organizations to focus on those populations, in exchange for agreeing to serve as providers of last resort. If rates are set high enough, providers can build a sustainable business model supporting people with very complex needs in an integrated, inclusive way.

________

There are a wealth of other things that I could cover here, but I think we’ve probably covered enough for two (very long) blog posts. I have deliberately chosen to focus these posts on the issues that are most relevant to state policy, since I suspect my average reader is much more likely to be engaged there. At the federal level, the disability advocacy community remains actively engaged on things like putting pressure on 14(c) certificate holders with the ultimate goal of abolition, reforming contract preferences that continue to send hundreds of millions of dollars to sheltered workshops and shifting the incentives states operate under to encourage integrated employment outcomes.

If you are interested in reading more about those things, consider taking a look at the recently published interim report of the Department of Labor’s Advisory Committee on Increasing Competitive Integrated Employment of Individuals with Disabilities. Despite the clunky name, the Advisory Committee is the home of some of the most interesting discussions on disability employment policy today. For the severely wonk-ish amongst you, I highly recommend it.

A Note: Anyone who spends more than a few years working in public policy falls into jargon and inaccessible language, often without noticing it. If there is anything in this post that you don’t understand or don’t follow, feel free to comment with your questions. That also goes for those of you who have disagreements or conflicting views – I would love to hear from you too. As always, I reserve the right to moderate comments which are abusive, make personal attacks or seem to be made in bad faith.

17 thoughts on “(Almost) Everything You Need to Know About Sheltered Workshops: Part 2 of 2

  1. What is there to say but THANK YOU, Ari?? You have pulled together a huge amount of important but technically dense material and made some very concise arguments and explanations, while also sharing ideas for states who want to make transitions but can’t quite seem to figure out how to do it. What we continue to struggle with in MN (and other states too, I’m sure!) is the state’s seeming insistence on using transition to more integrated settings (especially employment) as a way to SAVE money…which means that those of us who have been supporting people in regular employment for years are likely to go out of business if the state follows through with the implementation of their currently proposed plans. I keep hoping that things will change before it’s too late… Thanks again for a couple of great blog posts, which I’ll be sharing in our networks, as well!

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  2. “[S]pending just $1,000 on respite care within the last two months reduced the risk of hospitalization for an autistic child by eight percent.” This is an extremely important point for Medicaid Managed Care Providers to understand–funding programs that reduce the workload of family caregivers is a good way to reduce hospitalizations for both the caregivers and the people they love. If you want people to be healthy, don’t send them to their doctor–send them out to work and play.

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  3. Wow. Really helpful organization of this information. An additional point regarding employment and SSI/Medicaid qualifications: Using Impairment Related Work Expenses allows one to deduct relevant expenses from the earnings that will count against SSI. Income spent on expenses such as Paratransit, caregiving, specialized equipment, medications will not be counted as disqualifying income.

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  4. Ari, I am so grateful you have started this blog!!!! While I’ve stepped away from activism for the time being — and possibly for the rest of my life depending on my health — I am grateful to read about these issues and have a link I can send anyone interested in learning more about such things as sheltered workshops, institutionalization, the three main deinstitutionalization movements, and how we might learn from past mistakes while implementing change.

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  5. Great article which I have already shared widely. I work with families whose loves ones are just accessing adult services and none like the day programs model and are looking at developing their own. It’s taking money away from the status quo so they are starting to listen.
    Another big piece is the passing of the ABE act and how SSI and Medicaid benefits will be affected. The Colorado governor signed it earlier this year and now we are waiting to see how it will be implemented. I think it could be a game changer if people with disabilities can earn more and save it and not lose benefits.

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  6. Ari, love the blog so far, and I really appreciate the materials that you’ve discussed and linked to here. And generally, I think this is well-put to answer the question on family and workshop-centric support for these sorts of environments. To me, however, what is missing is the answer to the consumer who, when fully informed, still wishes to make the choice of remaining in a segregated environment of some sort. If we are going to be fully respectful of consumer choice in the process, don’t we also have to be respectful of this choice as well? And if we are going to honor that choice, how do we best do so in a way that doesn’t backslide others from the preferred goal? That’s the conundrum that I’m currently struggling with, and I don’t have a good answer yet…

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  7. good 2 part article sheltered workshops don’t teach job skills they’re a dead end 3to5 percent get a job in the community the 95 percent are still working in sheltered workshops getting paid subminimum wage it’s wrong i know about it i worked at goodwill industries 34 day my total pay was $335.10 cents i didn’t have a intellectual or developmental disability i’m not mentally retarded the doctors at mental health are the retards i’m going to sue the mental health system for punitive damages in excess of $100,000,000.00 for making a false diagnosis they’re going to pay for it mental health is a fraud

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    1. Keep your greasy mitts off our shelters!!! we need them, and no, our kids are not being exploited. My son receives 750 SSI every month, and an additional 800 dollars as well from the PPP. He gets free transportation to work, free health care, food stamps, a free cell phone and a subsidized cafeteria program. Plus two vacation weekends a year in which he and his friends stay at a hotel . In addition to this it costs thousands of dollars that the state pays for him to even be IN the work shelter as you have to pay for coaches and aides and nurses as well as administerive people to help run the place.So lets drop the image of the tragic Oliver Twist victim toiling for pennies in a dreary building with no heat.

      Anyone who can do a fair days work for a fair days wage certainly should…but the reason my son and most of his peers are there in the first place is his severe cognitive delays and weird behaviours that put him at risk in the real world.Is it a glorified baby sitting service?? you bet it is, and we love it. And after 30 years of caring for a giant non verbal infant, you’d love it too.

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  8. That is so nice and wow, as far as the disability is concerned! I conquer with my friends who have congratulated you for dense and profitable material you produced. May it help us and those who w’d wish to explore more about the sheltered workshops in relation persons with disability. Thanks for intellectual enrichment!

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  9. Happy to see that there are so many disabled people willing and ready to tackle the real world. But for all your intensely dense rhetoric Im still not being told exactly WHAT my autistic son will be doing when the workshops are closed and the community access bunch has discovered that there’s a reason the word “disability” is something of a disadvantage.I’d rather he work in a shelter than languish in a medical center all day, It. gives him more of a sense of purpose. My son suffers from autism, retardation {yup. I said the R word} OCD and epilepsy. If you wanted to keep him entertained the way He would desire you’d have to spend about 300 dollars a day.

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  10. as a former client of the vocational rehabilitation program my former counselor judy lockhart told me i would get paid based on my productivity she with held information from me there was a file marked confidential with some information on me that i’m intellectually or developmentally disabled i did’nt have a itnellectual or developmental disability to be paid piece rate pay or sub minimum wage 30 years i worked at goodwill industries i made $1.00/hour i quit after 34 days back in 2005 i got a letter about ticket to work program take part in vocational rehabilitation program i thought yeah right work for .50 or .60/hour when i worked at goodwill i made $335.10 total don’t work for goodwill industries they pay pennies per hour it’s boring to work there it’s a waste of time to work there they pay sub minimum wage while they make$280.00 pay them .22/hour

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  11. sheltered workshops are not a option people with intellectual or developmental disabilities have a right to work in the community warehousing them in a segregated setting is wrong they sit there all day long doing the same boring work day after day for sub minimum wage i didn’t have a intellectual or developmental disability i was placed in a sheltered workshop goodwill industries for 34 days i quit because i made $1.00/hour don’t go to vocational rehabilitation it’s a waste of time they are nothing but dishonest greedy liars

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    1. Well it doesnt sound like it was the right place for you .But you can read and write, and you know what you want. For people like my non verbal autistic son they are wonderful places because they keep him safe and happy and he is occupied for a few hours. Alex likes repetitive boring work, its the only kind he can do. Believe me we have moved heaven and earth to give him every chance to learn and evolve but he likes it where he is.He would never survive in the real world.

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