Monday, January 30, 2017

MI Advocates Support Wage Increase of $1/hour for Direct Support Workers

Below is an alert from MALA, the Michigan Assisted Living Association, in conjunction with the Partnership for Fair Caregiver Wages. These organizations are requesting that you urge the Michigan Governor and Lt. Governor to support a $1/hour wage increase for direct support workers throughout the state. Those are the people who work directly with our loved ones in all kinds of settings. Anyone who is receiving support services through a community mental health agency is probably aware of the difficulty in finding and keeping people who provide high quality care and direct support. Low wages for these workers is a nationwide problem that has reached crisis proportions. "It is estimated that a Medicaid gross appropriation of $90 million would provide this wage increase."


Governor to Release Budget Recommendations on February 8 – Your Advocacy is Needed!

MALA is providing this urgent budget alert to request your immediate assistance in advocating for additional Medicaid funding to increase staff wages. Governor Rick Snyder will be announcing his executive budget recommendations for the October 1, 2017-18 fiscal year on February 8. MALA and other members of the Partnership for Fair Caregiver Wages met with the Governor’s office and the State Budget Director in November to discuss the staffing crisis in the public mental health system.

We urge you to send letters today to the Governor, Lt. Governor and MDHHS Director. Download their contact information. Also download talking points for your letters.

The Partnership’s recommendation is for a $1.00 per hour wage increase in the next fiscal year for direct support workers throughout the state. It is estimated that a Medicaid gross appropriation of $90 million would provide this wage increase.

Please act now and feel free to call or e-mail us if you have any questions regarding this urgent budget alert.

General Counsel
1-800-482-0118 ext. 2400

General Counsel
1-800-482-0118 ext. 2401

−A staffing crisis currently exists in the recruitment and retention of direct support workers providing Medicaid mental health services throughout the state. These services include community living supports, personal care, skill building and supported employment. 

− The Interim Report of the 298 Facilitation Workgroup includes Section 7 on workforce training, quality and retention. This Section specifically indicates that all Affinity Group participants recommended raising the wages and benefits of direct care staff. 

− The Section 1009 Report developed as a result of boilerplate language in the 2015-16 state budget bill recommends a starting wage of $2.00 per hour above the minimum wage, or $10.90 per hour. 

− The Partnership for Fair Caregiver Wages conducted a survey in August 2016. The survey findings included an average starting wage statewide for direct support staff of $9.30 per hour. The average turnover rate in this survey is 40%. 

− Low staff wage levels and high turnover rates have an adverse impact upon the continuity of services and quality of life for people with disabilities funded through the public mental health system. 

− It is strongly recommended that additional Medicaid funding of $90 million be appropriated in the 2017-18 budget for the Michigan Department of Health and Human Services. This funding would provide for a staff wage increase of $1.00 per hour.

See also the "1009 report" Executive Summary

Contact Information

Governor Rick Snyder 
P.O. Box 30013 
Lansing, Michigan 48909 
Phone: 517-335-7858 
Online contact information – 
Click on Contact the Governor and Share Your Opinion 

Lt. Governor Brian Calley 
P.O. Box 30013 
Lansing, Michigan 48909 
Phone: 517-373-3400 

Nick Lyon
Director Michigan Department of Health and Human Services 
333 S. Grand Ave. 
P.O. Box 30195 
Lansing, Michigan 48909

Sunday, January 29, 2017

My Different Son

Note from songwriter, Susan Werner:

Late in 2010, I received an email from Maureen Jerz, who is the parent of a young adult with special needs and is currently the Director of Development at the Federation for Children with Special Needs. Sometime last summer she had heard me sing a song I'd written called "My Different Son," and wanted to know if it had been recorded anywhere. I was happy to write back that I'd just recorded "Different Son" on a project due for release in March 2011. We then had a long conversation about special needs children and the challenges they and their families encounter every day - and it was apparent to me that Maureen and her organization are made of the best possible stuff. It's my pleasure to offer a free download of "My Different Son." Check out my site for more info.

Friday, January 27, 2017

CMS request for comments: VOR responds Part 2


VOR Responses to Questions Posed by the CMS Request for Information

What are the additional reforms that CMS can take to accelerate the progress of access to HCBS and achieve an appropriate balance of HCBS and institutional services in the Medicaid long-term services and supports (LTSS) system to meet the needs and preferences of beneficiaries?

The cost of care for individuals must necessarily vary and be responsive to varying needs. The right balance of HCBS vs. ICF or other congregate care will vary by state and should be driven by the individuals accessing services. Currently, CMS and states are pushing all parties to non-congregate HCBS settings regardless of need and choice. This can only result in people being placed in inappropriate settings. 

Too often the quest for “rebalancing” the service system – to shift “institutional” and other congregate care funding to non-congregate HCBS supports – neglects true person-centered options that avoid inappropriate and potentially dangerous settings and are in accordance with the needs and preferences of the individual.

Better oversight of HCBS services is also needed. Oftentimes, homes are staffed at inappropriate levels with little to no supervision of staff. Additionally, individuals requiring 24 hour nursing are being placed in HCBS settings where a nurse is not available at all or for insufficient hours. Delegating nursing responsibilities to non-professional staff members cannot replace the years of training and knowledge of a licensed nurse. This has also lead to cases of abuse, where non-licensed staff members have overmedicated patients to keep them sedated and easier to manage. The penalties for nurses mistreating patients can result in loss of license and career. The penalties for staff members overmedicating patients may not even result in dismissal. See, “In Treating Disabled, Potent Drugs and Few Rules

Sadly, there are numerous reports of abuse, neglect and death that have occurred when individuals are placed in inappropriate settings in deference to a one size fits all mindset. The tragic deaths in Georgia are but one example. See, “Girls Death among 500 in One Year In Community Care”.

We would also like to draw your attention to the recent series in the Chicago Tribune on abuse and neglect in the Illinois HCBS service system entitled “Suffering in Secret”, as well as the full 2011-2012 “Abused and Used” series on the abuse and neglect of the intellectually disabled in New York State from the New York Times.

Until there is an accelerated effort to provide better oversight for HCBS and to improve the quality of services overall, it would be irresponsible to accelerate access to HCBS where individuals are placed at risk of significant harm. 

What actions can CMS take, independently or in partnership with states and stakeholders, to ensure quality of HCBS including beneficiary health and safety? 

The first step is to honor Olmstead choice by allowing for individuals with I/DD, and when necessary, their parents and guardians to drive decisions about residential and employment care. Just as individuals without disabilities are in the best position to choose where and how they want to live, so are people with disabilities. Honoring Olmstead choice will ensure that individuals can choose the residential and occupational setting most appropriate for their individual needs and desires, whether that is in an HCBS setting or a congregate care setting, thus furthering health and safety.

The second step, naturally, is to preserve and rebuild the congregate care system nationally as part of the continuum of services offered by HHS and CMS. As people with I/DD age, even those who can thrive in an HCBS waiver setting today may need the higher level of care that an ICF can offer when medical complications increase and their current residence is unable to provide the necessary services. The need for such care for aging individuals with I/DD currently served in HCBS settings was addressed in a June 27, 2016 article in the Chicago Tribune, “Misericordia Opens Home to Care For Elderly with Disabilities” concerning Misericordia’s addition of four new homes to provide for sixty aging Down syndrome residents whose needs had increased. “Advocates and service providers say it's one of a variety of care options that will be needed with increasing urgency as people with disabilities live longer than ever before. In 1983, the average life expectancy for a person with Down syndrome was 25. Today, it's 65 to 70, fueled largely by the mastery of a surgical procedure that corrects a heart defect present in 1 out of 2 people with Down syndrome”, said Sara Weir, president of the National Down Syndrome Society, a nonprofit organization based in New York. "It's a new frontier," Weir said. "We just don't have enough resources in this area."

As a result of the shortage of appropriate accommodations for the aging I/DD population, many individuals are displaced from their HCBS settings and moved into nursing homes, hospitals, hospices, or other inappropriate facilities that lack the resources and trained staff required to deal with their increasingly complex needs. In many states there are too few remaining ICF/IID homes to meet the needs of this population. Staff in nursing homes and other default settings are rarely trained in the field of developmental disabilities and the programs and activities are not centered around the needs of people with intellectual disabilities. Many nursing homes are ill-prepared to handle the range of uniqueconditions and behaviors exhibited by individuals with I/DD. As a result, these individuals miss out on the opportunity to live in a community that suits their needs and is designed to offer them a fuller life. CMS has not yet addressed this issue adequately, and would do well to follow the example set by Misericordia.

Reinforcing the role of ICF’s/IID in the structure of our system will benefit everyone, not only the individuals who require that level of care. The presence of a person who is inappropriately placed into an HCBS waiver facility destabilizes the environment. They may require more time and energy from the staff, depriving other residents of time and services they need. Their behaviors may be disruptive, and the fact that their needs are not being met may actually elevate these behaviors. The other members of the home may begin to exhibit behaviors as well, in order to receive the attention they require. In addition, the presence of inappropriate clients in waiver settings increases the workload and stress levels of the already overworked and admittedly underpaid staff, causing greater turnover. The provider agency is resultantly stressed, trying to full time staff or getting people to cover in a “difficult” home. In short, no one benefits from placing individuals who would benefit from ICF/IDD care into a group home environment. The One-Size-Fits-All treatment of individuals with I/DD hurts everyone.

We have seen evidence that providers understand that they are incapable of meeting the needs of some members of the I/DD community. In Illinois, when the state decided to close the Jacksonville Developmental Center, an auction was held for providers to choose which residents they wanted to take in: “In April 2012, as Illinois moved to close several state institutions and relocate adults with disabilities into the community, representatives from group home businesses gathered inside the Jacksonville Developmental Center for a hastily organized auction. Adults with mild disabilities were the most coveted. A state official read aloud medical histories of residents with intellectual and developmental disabilities, prompting group home officials to raise their hands for desired picks. Group home operators knew that then-Gov. Pat Quinn wanted to empty Jacksonville quickly — before any serious union or community opposition could be mounted — but some were taken aback by what they saw as a dehumanizing approach. "We were appalled by the auction," said Art Dykstra, executive director of Trinity Services, the state's largest group home provider. (See, “A Troubled Transition” The Chicago Tribune, Dec. 30, 2016)

A similar story occurred in Connecticut, when the state offered private providers the opportunity to take over some of the group homes that had been run by the CT Department of Developmental Services. Many of the homes were unsuitable to the providers, as the needs of the residents were too high, the costs prohibitive. The providers would have lost money given the current wages. “It becomes difficult to bid on something you know doesn’t cover your costs,” said Barry Simon, president and CEO of Hartford-based Oak Hill, the largest nonprofit social services provider in Connecticut. (The Connecticut Mirror, December 7, 2016)

The third step that CMS can take to improve the system of care is to work within HHS to promote the reform of DD Act Programs such as DD Councils, Protection and Advocacy Agencies and University Centers on Disabilities, which use federal tax dollars to attack and undermine facility-based care. These agencies are overwhelmingly stacked with individuals who support a one size fits all solution to disability care. The token individuals placed on DD Councils who support Olmstead choice and the full continuum of care oftentimes find themselves marginalized, even bullied by others with opposing views. This imbalance leads to undue pressure placed on state disability service systems forcing system change before HCBS supports are in place and moving highly vulnerable individuals into inappropriate settings.

What program integrity safeguards should states have in place to ensure beneficiary safety and reduce fraud, waste, and abuse in HCBS?

Stronger regulations must also be placed on providers to report instances of abuse, neglect and major unusual incidences (MUI’s). Currently, the level of incident reporting in HCBS facilities falls far short of the standards required of ICF’s/IID. Furthermore, data on abuse, neglect and deaths in provider homes should be available to the public including information on the circumstances of the instances, barring the names of the individuals involved as dictated by HIPPA regulations.

Similarly, the level of inspection of HCBS facilities is insufficient to ensure the health and safety of residents, again falling short of the levels required of ICF’s/IID. While acknowledging that there are differences in the requirements of these different types of facilities, we believe that the gap is too wide, and that it has become far too common for incidents of abuse to go unnoticed or unreported, sometimes for years, in HCBS settings. We recommend that a Medicaid inspection system, similar to that which is used for ICF/IID homes, should take place in HCBS settings.

People involved in the person centered planning process should have clear and accurate information about the full array of residential and occupational services and settings that must be made available to the individual and information on “medically necessary” services that are funded by Medicaid. This includes information on both HCBS settings and congregate care settings, such as ICF’s/IID, as well as employment options including competitive integrated employment, supported employment, sheltered workshops and facility-based day programs.

The best advocate for a person who is unable to advocate for himself or herself is a parent, guardian, or family member who knows the individual well and cares about them. This is reinforced by the DD Act policy that states,

“…individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families” – (The Developmental Disabilities Assistance and Bill of Rights Act of 2000, 42 USC 15001(c)(3)(2000) 

Protecting the rights of individuals and their families in determining needed services and where the individual is to live assures accountability of the system of care to the individuals it serves.

What are specific steps CMS could take to strengthen the HCBS home care workforce, including establishing requirements, standards or procedures to ensure rates paid to home care providers are sufficient to attract enough providers to meet service needs of beneficiaries and that wages supported by those rates are sufficient to attract enough qualified home care workers?

HCBS workers take on a great deal of responsibility - the health and safety of very vulnerable individuals - with low pay and often no on-site supervision or form of back up should their colleagues not report to work or not perform their duties appropriately.

The burden placed on home care workers is increased when they are placed in understaffed homes void of skilled nursing care when such care is needed. Additionally, the nature of their work is physically and emotionally draining and can be dangerous when one considers behavioral challenges of some residents and injuries which may occur when transferring individuals with poor mobility and when attending to the personal care of the residents.

Low wages and high staff turnover among direct care professionals limits the ability of providers to recruit and train new staff and reduces the intimate familiarity between staff and the residents with I/DD they serve who have unusual needs, symptoms, and limited ability to communicate. As continuity of care declines, so does the health and safety of the residents.

Ensuring appropriate supports for the staff in terms of sufficient back-up, supervision and nursing will help ease their burden and have the added benefit of increasing the health and safety of residents. Please bear in mind the stress that workers live with, and the fact that a caring and conscientious staff member will suffer throughout their life if a person should suffer under their care due only to the fact that the worker had not been trained sufficiently or if an incident were to occur because the facility was understaffed. Workers need back up and support and should have protections for health and safety and individual rights.

Additionally, efforts should be made to bring direct care professionals together for mutual support, especially those who work in small community homes where they lack the support and supervision that is available in larger licensed settings.

A sustainable workforce should include requirements for training and a path for people to advance. Long-term caregiving is a skill. Caregivers should be encouraged to view this vocation as a career, not just a job. Experience, job-related training, education, and certification in specific treatment modalities are important qualities that providers should cultivate and reward. Without such support, the high levels of turnover and staff discontent will continue to plague the HCBS system.


In conclusion, a successful developmental disabilities service system must be driven by Olmstead choice. Olmstead recognized that to support people with lifelong intellectual and developmental disabilities, we must take into account a widely diverse population who need a full range of options to address their needs. Doing so will enable individuals with I/DD to engage in the larger community in a manner which protects health and safety and their rights.

CMS is charged with attending to the needs of every individual, regardless of their degree of ability or disability. We do not see evidence that depriving one segment of the population to serve another (robbing Peter to pay Paul) is a reasonable or ethical policy position for CMS and other federal agencies serving people with I/DD, nor do we see evidence that following such policies results in serving more individuals or improving care overall. System biases that marginalize or target segments of the I/DD population result in depriving vulnerable people of the services and settings they need for their survival.

Read all VOR comments to CMS here....

Thursday, January 26, 2017

CMS request for comments: VOR responds Part 1

In November 2016, the Centers for Medicare and Medicaid Services (CMS) issued a “Request for Information” (RIN 0938-ZB33) to inform the agency’s future decision-making with regard to: accelerating access to Home and Community Based Services (HCBS); ensuring the quality of HCBS including beneficiary health and safety; safeguards to ensure safety and reduce fraud, waste and abuse in the HCBS program; and strengthening the HCBS home care workforce.” 

CMS is the federal agency that regulates Medicaid, including Home and Community-Based Services (HCBS) that are provided through Medicaid Waivers or through State Plans. Comments in response to the Request for Information were due on January 9th, 2017.

This is the full response to CMS from VOR to the request for comments. I participated in writing the VOR response as part of a VOR committee. [JRB] Below is part 1 of the response:


VOR is a national non-profit advocacy organization representing individuals with intellectual and developmental disabilities (I/DD) and their families. We support a continuum of quality care options to meet the diverse needs of people with I/DD. This includes residential options in the family home, the individual’s own home, licensed group homes, disability farms, intentional communities, and Medicaid-licensed "congregate" [setting in which more than 3 people with disabilities live or receive services] care facilities (i.e., ICF’s/IID). We also supports the full array of employment options – competitive employment, sheltered workshops and facility-based day programs.

...We are the only national organization that represents the interests of individuals who choose and require facility-based residential supports. Federal law, including Medicaid, the Americans with Disabilities Act and the 1999 U.S. Supreme Court Olmstead decision require the provision of a range of service options responsive to all levels of need...

...We also support a service system driven by the choices of individuals with I/DD with the aid, when necessary, of their parents and guardian. A person centered planning process guided by these primary decision-makers ensures the formation of individualized plans of service which identify and address the unique needs and desires of the vulnerable persons served through the selection of appropriate supports from a full continuum of care. Such a system honors Olmstead, which makes individual choice paramount and emphasizes the need for a wide range of services.

Before answering the questions put forth in the CMS Request for Information, VOR has concerns about CMS policies, including the 2014 HCBS Settings rule. Changes to the rule should be considered to remove barriers to a cost-effective system of care for people at all levels of disability:

1. HCBS policies as now written are being used to enforce an incorrect and harmful misunderstanding of the Americans with Disabilities Act as interpreted by the 1999 Supreme Court Olmstead decision:

Many, if not most, federal agencies and federally-funded advocacy groups serving people with I/DD, incorrectly interpret Olmstead and the ADA to require deinstitutionalization and HCBS settings, regardless of individual need and choice. The 2014 HCBS rule encourages this interpretation by disqualifying certain settings from receiving HCBS funding unless they have undergone “heightened scrutiny”, a process that ultimately leaves the determination of whether a setting is “community enough” up to CMS, rather than the individual with I/DD, and when necessary, their parents and guardian.

The bias against any kind of congregate residential setting where more than 3 or 4 people with disabilities are served together is clear from the restrictions placed on even the contemplation of future planned communities and congregate settings. The same holds true for facility-based occupational settings and the increasing restrictions placed on them. Such settings offer features to ensure the safety and health of residents while providing a community in which individuals with I/DD can reach their full potential and maximize their independence. This bias is particularly destructive as it directly attacks the right of individuals with I/DD to freedom of assembly, a fundamental American right.

The ADA and Olmstead assure opportunities for people with I/DD, but they do not dictate one-size-fits-all solutions. Individual choice among the widest possible range of quality living and occupational options is what is necessary to realize the goals of the ADA and Olmstead. VOR supports the full reading of Olmstead, making individual choice of services paramount and ensuring a full range of living and work options in order to meet the spectrum of needs of this very diverse population.

See also from VOR, "The Olmstead Decision Has Been Misinterpreted" and Celebrating The 17th Anniversary of the Olmstead Decision: Opportunities and Choices

2. The HCBS rule makes presumptions about the abilities of people with IDD to live independently, work, and participate in the community that do not apply to many individuals with I/DD, especially those with the most complex, severe, or profound disabilities. These can lead to inappropriate services and residential options being imposed on individuals and their families that are unwanted and ignore individual needs for special accommodations to ensure the health and safety of the person with I/DD.

In the Request for Information, CMS cites the ADA, as saying that “the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals”. CMS needs to clarify that this goal is not a requirement imposed on individuals with disabilities. In fact there are numerous protections in the ADA, Olmstead, and Medicaid law that assure appropriate services based on individual need and preference. The integration mandate from the ADA regulations states that “a public entity must administer services, programs, and activities in the most integrated, least restrictive setting appropriate to the needs of qualified individuals with disabilities.” [28 C.F.R. § 35.130(d)] [emphasis added]

Making presumptions about an individual’s abilities and setting unrealistic goals which do not recognize their disabilities is dangerous, dehumanizing policy. If we as a society are to honor the full reading of Olmstead, we must first be willing to honor the individual with I/DD by recognizing and accepting who they are – abilities, disabilities and all. Doing so is the first step in providing a quality disability service system that protects health and safety.

3. CMS should lift its prohibition on using HCBS funding to pay for services that are available in Medicaid-licensed facilities, such as Intermediate Care Facilities (ICF’s/IID), or in proximity to these facilities. These facilities have many resources that are often desperately needed by people living in community settings: specialized medical, behavioral, and dental services, recreation, social activities, and respite care, to name a few. To arbitrarily cut off HCBS funding to individuals living in community settings who wish to avail themselves of these resources, squanders resources that could give valuable support to individuals living in the community.

We believe strongly that proximity to a facility with its services, peers with disabilities, and amenities, at best enhances community qualities and should not disqualify individuals living in HCBS settings from voluntarily utilizing the resources available in ICF’s/IID. Often, the nature of the services provided by the ICF/IID are specifically tailored to the needs of individuals with I/DD, and the individuals performing those services are more familiar with the needs and sensibilities of this unique population.

Therefore, CMS regulations that prohibit the provision of HCBS residential and work settings on or adjacent to ICF/IID campuses are harmful in terms of limiting opportunities and marginalizing vulnerable people. Segregating people with lower levels of disability from people with higher levels of disability has the effect of stigmatizing and marginalizing the individuals who choose and rely upon ICF’s/IID care. CMS disparages ICF/IID settings by labeling them “isolating” or “segregating” from the larger community. The residents and their families view their homes as communities designed to address their needs and provide them with a combination of opportunities and services not available anywhere else. CMS should embrace ICF’s/IID as an important part of a continuum of care.

4. CMS needs to assess the true cost of implementing the 2014 HCBS rule. Complying with the rule is proving costly for the states, resulting in states cutting services and displacing vulnerable individuals from their homes. The closing of congregate settings to comply with the new rule and so-called Olmstead enforcement activities have further harmed disability service systems in states by increasing wait lists and forcing people into inappropriate settings they did not choose, settings that are often unprepared to ensure their health and safety. The whole system of care is being undermined in the name of inclusion, integration and Olmstead enforcement, contrary to the plain language and intent of Olmstead as a vehicle for choice.

The expectation of savings from moving individuals from congregate care (ICF’s/IID) to smaller licensed group homes, or from small group homes to unlicensed community settings, is unlikely to be realized unless there is also a reduction in the quality or quantity of services needed by individuals with I/DD. These expectations are often based on faulty cost comparisons, which fail to account for the full array of public benefits accessed by individuals receiving HCBS care. Unsustainable costs have resulted in even longer waiting lists and tragic outcomes. [See VOR’s “Widespread Abuse, Neglect and Death"  in Small Settings Serving People with Intellectual Disabilities”, 2016 ]

Often, the increase in HCBS comes at the expense of ICF/IID residents who lose their homes due to federally funded litigation. Happily situated ICF residents pressured or forced to leave ICFs through litigation receive HCBS placements ahead of individuals who have been waitlisted for years. The policy of shutting down successful residential placements is even more absurd when you consider many of the wait-listed individuals may in fact prefer and can benefit from HCBS settings. These individuals are forced to wait longer now that former ICF/IID residents move to the front of the line.

The Case for Inclusion annual reports produced by UCP on how well state Medicaid programs serve people with I/DD, shows that with the increase in the use of Home and Community Based Services over the last decade, waiting lists for residential and other services have increased from 74,000 in 2005 to 350,000 in 2016, an increase of nearly 400%. At the very least, it can be said that increased use of HCBS has not resulted in fewer people waiting for services.

5. CMS policies as well as federally-funded advocacy organizations portray congregate settings as isolating and segregating, a “last resort” on the continuum of care and services. Whether these settings are technically “institutions” as defined by Medicaid law, the individuals and families who rely on this level and type of care do not view them as “institutions” in the disparaging way the term is usually used. 

Facilities such as ICF’s/IID, and other licensed and regulated group settings, and innovative intentional communities for people with I/DD provide lifesaving care in an environment that enhances the individual’s access to family, friends, and the greater community, just as small, unlicensed supported living situations can isolate and segregate individuals in settings that jeopardize the individual’s safety, health, and peace of mind. [For example, please see the 2012 report from Disability Rights Washington and Columbia Legal Services, “Too Little, Too Late: A Call to End Tolerance of Abuse and Neglect”, an investigation of abuse and neglect in the Medicaid-funded Supported Living Program.] Also, the 7th Circuit Court of Appeals found that, "Isolation in a home can just as 'severely diminish the everyday life activities' of people with disabilities. (Olmstead, 527 U.S. at 601) “In fact, although family relations might be enhanced at home if people are around, isolation in a home may often be worse than confinement to an institution on every other measure of ‘life activities’ that Olmstead recognized." (Steimel and Maertz, et al., v. Wernert)

See also VOR’s “Giving a Voice to Families and Guardians - A Survey of Families and Guardians of Individuals with Intellectual and Developmental Disabilities In Various Residential Settings”, April 2015. 

As Sister Rosemary Connelly, the director of Misericordia, so wisely puts it: "Big can be bad. Small can be bad. Both can be good." Misericordia is a “community of care” in Chicago that serves over 600 people with mild to profound I/DD through a spectrum of residential options and services.

Wednesday, January 25, 2017

What the studies DON’T show in the case against intentional communities

Amy Lutz, an autism parent and author, has written an article for her Inspectrum blog in Psychology Today called, “Ideology, Not Data; Studies fail to support the case against intentional communities”. She took exception to a recent blogpost by Ari Ne’eman, the founder of the Autism Self Advocacy Network (ASAN), “...depicting those of us who believe that more choices are better—virtually all the time, but particularly when it comes to residential and vocational options for the intellectually and developmentally disabled—as ‘fringe’ and ‘pro-institution.’” ASAN and other advocacy groups claim that their public opposition to farmsteads, intentional communities, and other larger residential settings is “overwhelmingly” supported by research.

Lutz took the next step in this controversy and read through the research cited by these advocacy organizations. She found that the studies are plagued with methodological flaws and their conclusions are sometimes the opposite of what the advocates would have us believe -- that intentional communities have many benefits over dispersed settings.

Among the many problems with the research is that the worst institutions of the past that housed thousands of people, many of whom had mild impairments, are used as the baseline to compare current settings. She also finds Inconsistency in defining key variables, such as size of the setting, the degree of disability of the individuals involved, and the variety of ways that settings are characterized:

“A final difficulty in assessing the research is the tremendous impact that degree of impairment has on this entire debate. Studies consistently report that residents of residential campuses score lower on IQ and adaptive functioning scales, and engage in more challenging behavior, including aggression and self-injury—factors that likely determined their placement in more restrictive settings in the first place….”

Lutz also addresses the ideology behind the movement to push all adults with DD into smaller dispersed settings that is motivated by the goals of social justice, inclusion, and combatting discrimination, often at the expense of individual needs and choice:

"…While Emerson’s concern [referring to an article by Erik Emerson] for social justice is noble, perhaps he might reconsider sacrificing the right of our most vulnerable citizens to choose where and with whom they live—a right I doubt he would relinquish for himself—to his vision of what an inclusive society looks like. Because if the 'subjective wellbeing' of my son and his peers isn’t important to Emerson, it is vitally important to them, as well as to parents such as myself, friends, providers, professionals and virtually any stranger on the street—who, if asked, would almost certainly agree that happiness is what all of us want, for all our children. Hardly a position to be dismissed as 'fringe.'"

Read the full article and pass it on.

Also by Amy Lutz: “Who Decides Where Autistic Adults Live?

Wednesday, January 18, 2017

Donald Trump, disabilities, and matters of the heart

In November 2015, Donald Trump was shown on a video mocking a disabled reporter, a now infamous event that he can’t seem to shake, despite his claim that he could not remember ever meeting the reporter and that he did not know that he had a disability.

The award-winning New York Times reporter who Trump mocked was Serge Kovaleski. He has a physical disability called arthrogryposis, a condition causing joint contracture in his right arm and hand. Trump's attempt at humor mimicked Kovaleski’s condition.

According to a New York Times article, “Donald Trump Says His Mocking of New York Times Reporter Was Misread” by Maggie Haberman, 11/26/15:

“Mr. Trump, who said he did not recall having met the reporter, Serge F. Kovaleski, issued the statement over Twitter one day after news media reports that he had imitated the reporter during a rally in South Carolina. Mr. Trump described Mr. Kovaleski as trying to back away from a story he wrote in September 2001 while he was working for The Washington Post. The candidate used the article to try to justify his widely debunked claims that there were 'thousands and thousands' of people 'cheering' the fall of the World Trade Center after the Sept. 11, 2001, terrorist attacks." 

No one has been able to validate the claim by Donald Trump that thousands of people cheered at the fall of the World Trade Center after the terrorist attacks. According to the New York Times account,

“After reports that the authorities had found the accounts unfounded, Mr. Trump seized on the 2001 article by Mr. Kovaleski as proof of his claim. That story contained a sentence saying that the authorities in the days after the terrorist strikes had detained and questioned 'a number of people who were allegedly seen celebrating the attacks' on rooftops with tailgate-style parties. The story never referred to 'thousands,' and it did not say that the allegations had been substantiated. Mr. Kovaleski, in interviews since Mr. Trump made his claim, has said his reporting did not bear out the 'thousands' number, or even 'hundreds.'”

Even, a right wing website for news and commentary and a fervent supporter of Mr. Trump, agrees in this post from 12/1/15:

“There is nothing yet that validates Donald Trump’s claim that on that terrible September morning 'thousands and thousands' of American Muslims cheered the collapse of the World Trade Center. At worst, though, the Republican frontrunner is guilty of exaggerating….”

Had Trump ever met the reporter who has an obvious physical disability? According to the the 11/16/15 New York Times article:

“…Mr. Kovaleski said that he met with Mr. Trump repeatedly when he was a reporter for The Daily News covering the developer’s business career in the late 1980s, before joining The Post. 'Donald and I were on a first-name basis for years,' Mr. Kovaleski said. 'I’ve interviewed him in his office,' he added. 'I’ve talked to him at press conferences. All in all, I would say around a dozen times, I’ve interacted with him as a reporter while I was at The Daily News.'"

How are we to interpret this episode involving the ridicule of a disabled reporter by mimicking his disability? The incident might have been disposed of with an apology and a plausible excuse from the Trump team. But the infamous event came up again and again in the campaign leading up to the 2016 election and most recently in a speech by Meryl Streep at the 2017 Golden Globe awards. According to the article from the Washington Post,

“…it's not exactly a controversial viewpoint to believe that Trump was in the wrong on this one. In fact, as of August, it was the one thing he had done that bothered people most, according to a Bloomberg poll. Fully 62 percent said they were bothered “a lot” by it, and an additional 21 percent said they were bothered “a little.” Just 15 percent said it didn't bother them at all.”

Trump’s senior advisor Kellyanne Conway, in a confrontation with CNN’s Chris Cuomo, said in defense of Trump:

“'Why don't you believe him? Why is everything taken at face value?' Conway asked CNN's Chris Cuomo while talking about Meryl Streep's criticism of Trump at Sunday's Golden Globes.

"She continued: 'You can't give him the benefit of the doubt on this, and he's telling you what was in his heart? You always want to go by what’s come out of his mouth rather than look at what’s in his heart.'"

Excuse me, but what comes out of a person’s mouth is the only way most of us have to determine what another person is thinking, much less what is in another’s heart.

When an incident like this is poorly explained and is not well understood, the finger pointing and defensiveness sows confusion and distrust and makes us doubt everything we hear or see from public officials and the media. Maybe that’s the point of Trump’s defenders holding fast to a strategy to never admit wrong and never apologize. If he gets something wrong, he can throw doubt on everyone and everything else with his confusing excuses and contradictory statements.

The rest of us live in an imperfect world of imperfect people and government institutions and we can’t afford to engage in strategies that avoid reality and make our lives more confusing. 
For families of people with disabilities, mocking and ridicule of a man and his disability is very much a matter of the heart. Let’s hope that the new administration learns something from this incident - that it’s OK to say you're sorry. In the meantime, judge the Trump team by its actions and don’t be afraid to speak up.

See also, "Not 'She Said, He Said.' Mockery, Plain and Simple." by Liz Spayd, 1/10/17.

Thursday, January 5, 2017

Michigan : Washtenaw County events and news

The first event coming up this month is sponsored by Intentional Communities of Washtenaw (ICW), a non-profit group that is organized to help provide housing and services to people with DD:

Learn About the New Washtenaw CMH Strategic Plan
Speaker: Trish Cortes, CMH Director
Tuesday, January 10, 2017
7 - 8:30 P.M.
Washtenaw ISD at 1819 South Wagner Rd., Ann Arbor, MI 48103 (Between Liberty and Scio Church Roads)

Washtenaw Community Mental Health is the county agency that funds most Community Living Support (CLS) services for persons with disabilities. This month, the ICW program will provide family members with the latest information about changes at the agency and at the state level that will affect our loved ones. 

Our speaker will be Patricia Cortes, CMH Director. Trish holds a Bachelors degree in Nursing and a Master degree in Community Health Nursing from the University of Michigan. She has held a variety of positions with Washtenaw County since 2000 including Mental Health Nurse,Health Service Supervisor, Program Administrator - Developmental Disabilities, Program, Director of Health Service Innovation, and Director of Community Support and Treatment Services (CSTS) prior to becoming CMH Director. She has established and maintained countless internal and external partnerships in the community. She recently has led the process of developing the CMH Strategic Plan. 

Our monthly meetings are open to the public and offer a great opportunity to learn more about ICW and to meet other families with similar challenges. 

We hope to see you there.

Al Blixt, Board Chair
Intentional Communities of Washtenaw 


St. Louis Center in Chelsea, MI is a "caring residential community for people with intellectual and developmental disabilities". It is sponsoring a program for special needs families on "Securing the Future":

Securing the Future 
for Special Needs Families 
Protect, Provide and Prosper 

Thursday, February 16, 2017 
7:00 - 9:00 pm 

St. Louis Center 
16195 W. Old US Hwy. 12, Chelsea MI 48118
Family Welcome and Orientation Center 

Many families with special needs children or adults have a difficult time navigating the future for their loved ones, and advanced planning can ensure a positive quality of life for years to come. Our advisors can help special needs families by explaining the ins and outs of saving and investing to ensure long term success. Please join us for an opportunity to ask our distinguished panel about financial investments, special needs trusts, and guardianship issues to obtain the answers you seek while planning for the future. 

Speakers: Dan Johnson, Investment/Financial Advisor, Northwestern Mutual, Southfield, MI.....Joshua R. Fink, Guardianship - Attorney, *Fink & Fink, Pllc*, Ann Arbor, MI;..... Daniel R. Shirey, Special Needs Trusts *Kitch, Drutchas, Wagner, Valitutti & Sherbrook*, Detroit, MI.

Please contact Joe Yekulis, PR Director, at SLC at 734-475-8430 
for more information or to register. 
To learn more about St. Louis Center, visit our website 


The "Village" at St. Louis Center

Groundbreaking Marks New Era for St. Louis Center (9/29/16)

After several years of planning and fundraising, the St. Louis Center finally celebrated a groundbreaking ceremony for St. Louis Guanella Village with about 275 of their closest friends on Thursday, September 29, 2016. The “Village” is considered an “intentional community,” with the construction of four new children’s homes immediately for children with intellectual and developmental disabilities. The “Village” will also include other segments of homes and townhomes for people with I/DD and their families. In spite of the rain soaked evening, supporters came from far and wide to enjoy a fine selection of hors d’oeuvres provided by Food Art, Inc. and speeches from key supporters and local dignitaries. Development Director Peggy Cole was moved that the time had finally arrived to sink shovels into the ground. “We owe this moment to our many supporters who see St. Louis Center as a bright light that is leading the way for others. We have many hard working committee members who share our dream of the St. Louis Guanella Village, and have worked to make this happen.”... 


For more information on St. Louis Center's Guanella Village see the website:

"New housing built in the Village will guarantee the provision of the full continuum of care for aging people with I/DD and will provide housing and care opportunities for them and their families."

Employment choice for DD includes facility-based workshops

VOR is a national organization that advocates for a full range of services, residential options, and employment opportunities for people with Intellectual and developmental disabilities. This is a position statement from the VOR Website: 

VOR's Position on Sheltered Workshops

By Harris Capps and Joan Kelley

Sheltered Workshops are private non-profit, state, or local government entities that provide employment opportunities for individuals with disabilities. Persons served in this environment may include those with developmental, physical, and/or mental impairments, ranging from mild to extreme/profoundly affected individuals. Sheltered workshops:
  • Provide prevocational training, with the goal to prepare for competitive employment for available jobs in the open labor marke. 
  • Emphasize support of individual needs, based on ability to choose work activities that fit with a person’s skills 
  • Often include additional training in personal care, living skills and developing social skills 
  • Honor the depth and scope of the DD population, recognizing that some individuals may not ever be able to be competitively employed 

After completing a rehabilitation program, many individuals are able to leave the workshop environment and enter regular employment, if there is a job available for which they qualify. Individuals unable to obtain regular employment because of the severity of their impairments or unavailability of jobs can remain in the workshop environment. Individuals performing services are paid a fraction of, or up to minimum wage, depending on their capacity to perform the services. [1]

While work is the main focus at facility based programs, sheltered workshops also provide opportunities for people with disabilities to challenge themselves, further their self-esteem and self-confidence, develop friendships and engage in their communities. Because of the supports and protections in place, those with more severe/profound impairments can find success in meaningful and productive activities which may not otherwise be possible for them in mainstream businesses. Sheltered workshops often include adult day services which include personal care, living skills, developing social skills, etc.

Often, individuals with disabilities too severe for sheltered work rely on day programs for community integration and meaningful and constructive activities during the day. These facility-based programs also provide opportunities for building self-esteem, confidence, social skills and friendships so important for both mental and physical health.

Specialized Supports

For those individuals with intellectual and developmental disabilities (I/DD) who enter the competitive workforce, specialized supports are often required to ensure a successful work experience. Proponents of “supported employment” contend that as long as the appropriate supports are in place, the goal of “real” employment should be achievable for everyone with a disability. While this is a laudable goal, society must recognize the pressures that exist in business that are driven by economic issues, deadlines and competition in the market. For many with I/DD, these realities interfere with their ability to maintain competitive jobs long-term and for a full eight-hour workday.

Eliminating Special Minimum/Commensurate Wages

Provisions for Special Minimum Wage Certificates, under the Department of Labor, Fair Labor Standards Act (FLSA) of 1938, Section 14(c), help people with disabilities obtain jobs in a competitive workforce. Employers who receive a certificate from the U.S. Department of Labor’s (DOL) Wage and Hour Division (WHD) have the ability to pay special minimum wages (below the federal minimum wage) to employees who have disabilities, if the disability affects job performance. [2]

This provision of the FLSA is often inaccurately referred to as offering a “Sub-Minimum Wage” in what appears to be an intentionally derogatory manner to dampen public support for the program. There have been formal attempts to eliminate Special Minimum Wage Certificates altogether One example, H.R. 831, is a bill intended to phase out special wage certificates under the Fair Labor Standards Act.

Efforts to end the provision of special minimum wage certificates could adversely affect individuals with significant and profound disabilities if they are are unable to produce goods at the same rate as less disabled or non-disabled workers. Liability issues, and the additional costs involved with providing necessary specialized supports in the work environment can also become disincentives to hire individuals with the most significant needs. Offering a special minimum wage incentivizes and enables employers to provide employment to individuals with disabilities who may not otherwise be given the opportunity to work.

Why You Should Be Concerned

Many of the taxpayer-funded government agencies and non-profit organizations that disparage Intermediate Care Facilities (ICF’s) as ”isolating” use the same criteria to stigmatize sheltered workshops. They deliberately disregard the importance of sheltered workshops and facility-based day programs to the portion of the I/DD population who depend upon them. These organizations, often taxpayer funded entities, have legislated against sheltered workshops in the same manner in which they have attacked ICF’s, despite the lack of employment opportunities for individuals with I/DD, and the fact that few employers have an incentive or the ability to hire individuals with profound disabilities. Integration into a non-disabled workplace is not the primary goal for all individuals with I/DD, and should not be given precedence over safety, productivity, or a sense of community among one’s peers.

The continued, and many believe intentional, misinterpretation of the Supreme Court’s Olmstead decision permeates numerous policies, including the Work Innovation and Opportunities Act (WIOA), which severely limits work settings and rehabilitation programs for disabled persons. Such policies negatively affect individuals with the most extreme and profound disabilities by eliminating the individual’s right to choose the work environment most appropriate to their unique needs. [3]

In its recently released 13-page Guidance document on Employment [4], the Department Of Justice (DOJ) uses the word “segregated” or “segregation” no less than 40 times when referring to sheltered workshops. At the same time, it picks and chooses selective passages from Olmstead, deliberately ignoring those passages that address the needs of those individuals with disabilities who rely upon higher levels of care. In doing so, the DOJ marginalizes our most vulnerable citizens and even puts them at risk by ignoring warnings that permeate Olmstead’s majority and concurring opinions.

DOJ’s selective interpretation of the Supreme Court Olmstead Decision amounts to an unwarranted attack on the portion of the I/DD population with the most complex need, in that it eliminates the settings that best support them. The DOJ refuses to acknowledge that individual choice is paramount in both residential and employment options, and thereby violates the civil and human rights of vulnerable citizens by refusing to meet the need for a wide range of programs to support that choice. People with significant disabilities deemed not qualified to work would be forced to stay at home, receive no wages, and be denied the tangible and intangible benefits of work.

States Must Stand Up for Their Citizens with I/DD

Families seeking answers when they find their loved one’s sheltered workshop or day program under attack are often told of recent CMS rule changes by state officials. State officials, however, often fail to take advantage of the opportunities CMS provides within the rule changes to allow states to maintain these programs with adjustments.

The Centers for Medicare and Medicaid Services (CMS) makes clear in their guidance that facility based settings are not prohibitedand that states have flexibility in determining what those services look like. In fact, CMS guidance states, “The rule creates a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics.” [5]

CMS’ publication of “HCBS FINAL REGULATIONS 42 CFR Part 441: Questions and Answers Regarding Home and Community Based Services” [6] provides further clarification to the new rules:

Question 4, page 10: “Does the regulation prohibit facility-based or site-based settings?”

Answer: No.

“The regulation requires that all settings, including facility- or site-based settings, must demonstrate the qualities of HCB settings, ensure the individual’s experience is HCB and not institutional in nature, and does not isolate the individual from the broader community. In particular, if the setting is designed specifically for people with disabilities, and/or individuals in the setting are primarily or exclusively people with disabilities and on-site staff provides many services to them, the setting may be isolating unless the setting facilitates people going out into the broader community.”

“We note, however, that states have flexibility in determining whether or when to offer HCBS in facility-based or site-based settings, as the regulation only establishes a floor for federal participation.”

Question 5, Page 10: “Do the regulations prohibit individuals from receiving pre-vocational services in a facility-based setting such as a sheltered workshop?”

Answer: No

“Therefore, a state could allow pre-vocational services delivered in facility-based settings that encourage interaction with the general public...”

“We note, however, that pre-vocational services may be furnished in a variety of locations in the community and are not limited to facility-based settings, and that states have flexibility in determining whether and when to use facility-based settings.”

Question 6, Page 11: “Will CMS allow dementia-specific adult day care centers?”

“The HCBS regulations do not prohibit disability-specific settings... the setting must meet the requirements of the regulation, such as ensuring the setting chosen by the individual is integrated in and supports full access of the greater community...”

Question 7, Page 11:“Can a day service that has both HCBS waiver participants and ICF residents provide Medicaid-covered HCBS in an ICF/IID?”

“If the state believes that the setting meets the HCB settings requirements and does not have characteristics of an institution, the state can follow the process to provide evidence and demonstrate that the setting can or will comply with the HCB setting requirements or regulations.”

VOR encourages families to point this guidance out to state officials and hold them accountable for their duty to provide safe and appropriate services for the vulnerable individuals they serve.


  • VOR asserts that sheltered workshops and facility-based day programs are also supported employment services, allowing individuals with intellectual and developmental disabilities to pursue their skills and interests in the most integrated setting possible according to their individual needs and capabilities. They provide hundreds of thousands of individuals with productive employment, responsibility, necessary structure and the opportunity to achieve and to measure their own skills and to work toward improving them.
  • VOR believes in providing more, not fewer, service options to meet the wide range of intellectual and developmental disabilities. While expanding programming for individuals that can benefit from it should also be pursued, vital existing services that are clearly meeting needs should be retained.
  • VOR asserts that programs and services for people with disabilities, whether residential or employment focused, must be based on individual choice, need and capabilities in order to be successful, as stated in Olmstead
  • VOR supports supported employment services in community settings for individuals who are capable of working in this capacity and can benefit from these services.

There is a place for both integrated and facility-based employment services, as we as a society provide for the full continuum of care for individuals with disabilities as required by the U.S. Supreme Court Olmstead decision.

[1] Social Security, Program Operations Manual System, RS 02101.270

[2] Goodwill Industries, “Employment of People with Disabilities through FLSA Section 14 (c)

[3] U.S. Department of Labor Wage and Hour Division Fact Sheet #39H

[4] DOJ Statement on Application of Integration Mandate of Title II of the ADA and Olmstead to State and Local Governments’ Employment Service System for Individuals with Disabilities

[5] CMS Fact Sheet: Summary of Key Provisions of 1915(c) HCBS Waivers Final Rule

[6] CMS, HCBS Final Regulations 42 CFR Part 441: Questions & Answers Regarding HCBS Settings