Tuesday, June 21, 2016

Massachusetts: Sheltered workshop closures result in less employment and fewer options for DD

Here at The DD News Blog, we have covered the movement to close sheltered workshops  for people with developmental disabilities. These closures have been supported by disability rights advocates who claim that it is a civil rights issue and that services for people with disabilities provided in congregate settings (settings that serve more than 3 or 4 people with disabilities together) are necessarily discriminatory. That the individuals involved in sheltered workshop programs voluntarily choose to work in these settings and need the services they provide, does not seem to matter. As far as these advocates are concerned, they know better and have determined without necessarily knowing the individuals involved that congregate programs are illegally segregating and isolating. More often than not, the legal justification for this is based on a misinterpretation of the 1999 U.S. Supreme Court Olmstead decision interpreting the Americans with Disabilities Act.

Disability rights advocates  have also pushed to eliminate sub-minimum wage certificates for people with disabilities who work at a slower pace than their non-disabled peers or are otherwise unable to cope with integrated, competitive work settings. These certificates issued by the U.S. Department of Labor are often used by sheltered workshops to employ people with developmental disabilities. While abusive employment policies that exploit people with disabilities should not be tolerated, sub-minimum wages allow sheltered workshop programs to continue operating and pay for the services they provide. The people employed usually are eligible for social security and Medicaid benefits that subsidize their living expenses and pay for needed services. For people with DD who want to work in competitive, integrated work settings, supported employment services should be available along with a variety of work options that fit the needs of the individuals involved.

With the elimination of sub-minimum wages and the movement to close sheltered workshops, both reinforce the other and mainly result in reducing employment for people with DD and eliminating options that often work better for people with severe disabilities. 

Here is yet another example of this from the Massachusetts COFAR Blog:

David Kassel at COFAR has been covering a 2013 plan by Massachusetts to close sheltered workshops and to place people with developmental disabilities into the mainstream workforce. The promise made by disability advocates, the Massachusetts Department of Developmental Services (DDS), and corporate service providers was that integrated, competitive employment would be available for people with even the most severe disabilities, eliminating the need for sheltered workshops. As often happens, the promise has yet to materialize, leaving people with disabilities with fewer options for employment.

In “Few people moving from sheltered workshops to ‘integrated’ jobs”, 1/30/16, David Kassel describes the lack of progress toward a policy to move people with DD into integrated employment.

“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.”

According to Kassel, DDS records show that the number of people in sheltered workshops decreased by 61 percent, while the number of people with DD in corporate-run, community-based day programs increased by 27 percent. The number of sheltered workshop providers dropped from 39 to 14.

“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…”

Kassel goes on to explain what happened:

“‘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 [sheltered workshop] 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.”

Funding to transition people into competitive employment was less than requested and it appears that much of it went to providers of community-based day programs.

Kassel concludes that, “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.” 

In “House and Senate not following their own funding plan for employment of the developmentally disabled”, 5/31/16, by David Kassel at COFAR Blog, the story continues: All sheltered workshops in Massachusetts are scheduled to close by June 30, 2016. 

“But the problem is that the Legislature, and to some extent the administration itself, aren’t following through on the policy, which calls for beefing up funding for DDS day programs and job development staffing.  Last week, the Senate joined the House in rejecting higher funding levels considered by the policy planners to be needed by both day programs and employment programs for Fiscal Year 2017.

“…A likely result of this apparent under-funding is that relatively few people will be placed in mainstream jobs, but rather will be sent to potentially overcrowded day programs with inadequate staffing.”

In comments to the state, 

“…the ADDP [the Masssachusettts advocacy group for corporate service providers] maintained that funding for both the community day and work line item and sheltered workshops transfer line items needed to be boosted significantly in order to fulfill the plans to close the workshops and transfer clients to mainstream jobs…

“The ADDP comments also noted that as of October 2015, the number of individuals receiving community based day services more than doubled from 2,656 individuals as of June 2013, to 5,422. While noting that this increase was directly related to the closures of the sheltered workshops, the ADDP stated that the majority of those persons were not receiving any other DDS-funded employment services.

“The ADDP comments also pointed out that DDS day programs require significantly higher levels of staffing than the sheltered workshops did.”

Kassel concludes that, 

“It appears that the only policy the Legislature and the administration have pursued with a real level of commitment has been closing the sheltered workshops. But that’s only half the plan.  The problem with the Legislature, in particular, is that while it bought into the first half of the plan, it now has seemingly abandoned the critically important second half.

“Thousands of people have or will be removed from their sheltered workshops, and the Legislature appears to be leaving an unknown number of them in the lurch.”

Photos : June 2016

Capitol Hill

Midsummer Night

Greek Festival


Midsummer Night 2


Huron River Swan Family

Saturday, May 28, 2016

Unpaid "natural supports" in a Person-centered Plan are voluntary!

Justice in aging is a non-profit organization “fighting Senior Poverty through Law”. The focus of the organization on seniors necessarily overlaps with issues dealing with disability and poverty. 

This Issue Brief from Justice in Aging, “Voluntary Means Voluntary: Coordinating Medicaid HCBS with Family Assistance” by Eric Carlson, May 2016, discusses the use of “natural supports” in caring for and providing unpaid services to people who receive Medicaid-funded Home and Community-Based Services (HCBS). Although the emphasis here is on seniors receiving HCBS, it applies equally to people with developmental disabilities.

According to the report (p.2), the unpaid caregiving that families provide to people with disabilities are of major significance in the system of care and services: “…Annually in the United States, about 40 million family caregivers provide an estimated 37 billion hours of care. This unpaid assistance is valued at $470 billion."

The 2014 HCBS Rule from the federal Centers for Medicare and Medicaid Services clearly states that when unpaid “natural supports” are included in a person-centered  plan, those services are voluntary. This is from §441.725(b)(5) of the rule that applies to "state plan" Person-centered plans. The same wording applies to services for people covered by various Medicaid waivers. The plan must “Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS.” [emphasis added]

In many states, Medicaid policy in fact compels family members to provide “natural supports” by limiting the number of service hours available to the beneficiary. These limitations have been based on the state's definition of Medical Necessity that, in Florida, for instance, “denies Medicaid-funded services to the extent that those services are provided for caregiver convenience”. The Policy Brief cites numerous hearing decisions that have denied extending hours that the individual needed for care based on the idea that these hours were needed merely for the “convenience” of the caregiver, such as when the caregiver had to hold down a job in addition to their caregiving responsibilities at home.

[The report also notes that “Medicaid’s voluntariness requirement does not lessen any state-law legal obligation that a parent has to care for a Medicaid-eligible minor child, or that one spouse may have to care for the other.”]

These State definitions of Medical Necessity are clearly in conflict with federal regulations and they have been challenged successfully in some cases cited in the report. Ten other states have rules similar to Florida: Iowa, Kentucky,  Maryland,  Mississippi, Nebraska,  New Hampshire,  New Mexico,  North Dakota, Tennessee, and Wisconsin.

Fortunately, Michigan’s Medical Necessity definition does not include any reference to reducing paid services based on the “convenience” of the caregiver. Unfortunately, families who are providing natural supports often feel coerced into providing or paying for services that should be covered by HCBS and delivered through Community Mental Health agencies. Families are often not informed that "natural supports" are voluntary or they have been threatened with their loved-one losing services, if they do not go along with the plan that CMH wants them to agree to. Other factors include threats to change the way services are delivered in ways that the family feels would be harmful or inappropriate for their disabled family member.

Here is one example from the report (p. 5) that shows what I consider to be the cruelty of public agencies finding excuses in Medicaid law to deny services to people who desperately need them:

Personal Care Hours Denied, Forcing 78 Year-Old Mother/Caregiver to Provide Additional Assistance

David, a 60 year-old man, was diagnosed with multiple sclerosis in 1991. He became quadriplegic and required complete assistance with all activities of daily living. He used a bladder catheter and wore diapers. He transferred from his bed to a motorized wheelchair with the use of a Hoyer lift, and required assistance to operate the chair.

David lived alone, although his 78 year-old mother lived in a separate but adjacent residence. She had breathing problems and required oxygen on a regular basis.

Given David’s significant needs, he had been authorized for around-the-clock Medicaid personal care services (including homemaker services and companion care). He also was authorized for seven hours weekly of skilled nursing services, in order to provide catheter care and set up medications.

Based on a computerized recommendation, David’s managed care organization reduced his personal care authorization from 168 hours weekly (around-the-clock coverage) to 51 hours. An appeal was filed on David’s behalf, arguing that he could not request help in case of an emergency, and had a history of going into a coma-like state when suffering urinary tract infections. The appeal request cited evidence that David had fared poorly in a nursing facility, and had improved significantly after being supported with adequate services at home.

In justifying the reduction, the MCO claimed that weekly service hours exceeding 51 hours were for the convenience of the mother. The hearing officer, however, rejected this claim, finding that the evidence did not support the requested reduction. The hearing officer noted that the MCO was requesting roughly a 70% decrease in personal care hours (117 ÷ 168 = 69.6%), and cited David’s care needs and the mother’s own health limitations.

Among the observations and recommendations coming from the report are these:

“…No family assistance can be truly voluntary if it is needed to compensate for reduction or termination of a Medicaid-funded service.”

 “Definitions and service authorization procedures should clearly establish that a family’s personal care services are only to be taken into account if the family member is legally obligated to provide those services, or the family member has volunteered. Also, to honor the concept of voluntariness, a volunteering family member must have the ability to change his or her mind, if for whatever reason the family member no longer wishes to perform the services in question.”

I agree.

Thursday, May 26, 2016

Severe Mental Illness: Treatment before Tragedy?

San Francisco Bay Area mother, who believes the mental health care system is failing patients, is fighting for change. 

[Sorry about the ads!]

Wednesday, May 25, 2016

Michigan: Recommendations to stabilize the Home Care Workforce

This if from the PHI National Blog about a recently released report from Michigan. It is about the need to stabilize the workforce of Direct Support Professionals who work with people with disabilities and the aging population. PHI is a national organization “working to strengthen the direct-care workforce and prepare our nation to care for a growing population of elders and people with disabilities by promoting effective national and state policy solutions.”

From the PHI blog:

REPORT: Better Wages and Benefits Needed to Stabilize Michigan Home Care Workforce

by Matthew Ozga
May 25, 2016

Michigan's inability to retain a "qualified, competent" workforce of direct support professionals (DSP) must be remedied by, among other measures, immediately improving DSPs' wages and benefits, a specially convened workgroup concluded.

The Workgroup on the Direct Support Workforce, convened by the legislature last year to study the stability of the DSP workforce in the face of increased staff vacancies, unanimously recommended that DSPs earn at least two dollars per hour more than the state minimum wage (currently $8.50/hour and rising to $9.25 by 2018).

The average starting wage for Michigan DSPs is just $8.69/hour, and experienced caregivers earn an average of just $9.62, the workgroup reported. Nursing assistants in Michigan, meanwhile, earn an average hourly wage of $13.25.

The Workgroup also said that immediate steps should be taken allowing DSPs to earn paid leave….

Read the full report here… 

Direct Support Professionals, in their own words:

“In my home I have six staff and five subs who currently work under me. All of them have been with me for more than a year. Some have been working with developmentally disabled individuals as long as I have (37 years). We are African, African American, Asian, and white. We are young college students, single moms, and middle aged fuddyduddies. And when I asked all of them why they do what they do they simply reply ‘I like it’. This work tends to grab a hold of you. It tends to redevelop who you are. I even know a teacher who after teaching all day comes and work for us.”

"This is an important job, not a starter job or a stepping stone job. The people we serve are important people who play an important role in our society.”

Thursday, May 19, 2016

Michigan Dental Health

This is an overview of oral health in Michigan, including vulnerable populations, such as seniors, pregnant women, low-income children and other special populations, who are at risk for poor oral health outcomes.

This is part of a presentation from the Dental Access Project of the Michigan Council for Maternal and Child Health.

More information on the Michigan Dental Access Project: 

Full Report

Interviews with stakeholders

Michigan Maternal & Child Health (MCMCH) Website

The Michigan Dental Access Project has been studying legislation that would allow for Mid-level Dental Therapy as a way to alleviate the need for increased access to dental care. Someone with specialized training or a degree, beyond that of a dental hygienist and similar to that of a physician's assistant or nurse practitioner, could then provide some dental services under the supervision of a dentist that are not currently authorized.

Wednesday, May 18, 2016

Michigan updates on implementation of the Home and Community-Based Services rule

Under the federal 2014 Home and Community-Based Services [or Settings] rule, states must submit transition plans to the federal Centers for Medicare and Medicaid Services (CMS) describing how they will implement federal policies on community integration. Part of that process is to determine whether settings using HCBS funding are in compliance with the federal rule. Michigan will use surveys to make this determination.

Home and Community-Based Services are often referred to as Medicaid Waiver services, because they allow the state to waive some Medicaid requirements in order to use funding in non-traditional ways to serve different populations of people with disabilities.

For people with disabilities who live in their own or their family’s home and receive residential supports funded by HCBS, their residences are presumed to be in compliance with the rule and they will not be part of the residential survey. For people not living in their own or their family’s home, the state will survey every provider of HCBS services and the people who receive HCBS services to evaluate whether the setting complies with the rule.

Michigan’s Habilitation Supports Waiver (HSW) is a Medicaid Waiver that provides services to people with developmental disabilities. The state has other Medicaid Waivers for different categories of the disabled population and people using these waivers will also be surveyed. HSW surveys will be conducted by the Developmental Disabilities Institute (DDI) at Wayne State University in Detroit.

The surveys for providers and participants in the HSW are available for review on-line, but the actual surveys will be conducted by the DDI after notifying providers who will then notify HCBS participants of when the survey will take place. DDI will cover 50% of providers and participants before October 1st, 2016 and 50% after October 1st, 2016.

If you are a guardian or family member of a person who receives HCBS and the person will need your assistance in answering survey questions, the best course of action is to tell the providers of services that you want to be informed of when the survey will be conducted and that you want to participate. If you have a family member with cognitive disabilities, it would also be a good idea to review the survey questions. I found that for my sons many of the questions were not aimed at people with such severe disabilities and that certain answers could be misconstrued as indicating that their services do not comply with the federal rule. Exceptions can be made to parts of the rule for health and safety reasons, but these must be included in the person’s Individual Plan of Services (ISP). Keep that in mind for your next Person-Centered Planning meeting.

For more information on the survey process:

Frequently Asked Questions

Surveys of providers and HSW beneficiaries with general information from DDI including surveys in Word document format

Participant surveys

Residential provider Survey

Non-residential provider survey Non-residential services include HCBS-funded programs such as employment, skill-building, prevocational, and day programs. 


Michigan’s revised State Transition Plan for HCBS

Michigan revised its State Transition Plan for HCBS for public comment in December 2015. The state then revised the plan further and responded to comments. The Revised STP was sent to CMS on March 15, 2016 for approval.

The first part of this document includes comments on the plan with responses from the Michigan Department of Health and Human Services. The rest of the document is the latest revision to the STP.

Here is more Information on the federal HCBS Rule and State Transition Plans.

This is the Michigan Website on HCBS Transition.