Saturday, May 27, 2017

April 2017: VOR letter to U.S. Department of Health and Human Services

"Please remember the people for whom Medicaid was first intended. Their voice may be small in terms of decibels and votes, but the fortitude and goodness with which they lead their lives is boundless. We can all learn a great deal from them and we have a duty to protect them."----Caroline Lahrmann, VOR President

Below is a slightly shortened version of a letter to the U.S. Department of Health & Human Services and the Centers for Medicare and Medicaid Services from VOR.

April 5, 2017

Dear Secretary Price and Administrator Verma:

…[VOR's] membership is made up of family members and guardians of individuals with I/DD who access multiple forms of disability services under Medicaid such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), Home & Community Based Services (HCBS) group homes and intentional communities, sheltered workshops and facility-based day programs. Through the provision of a wide-range of services, we as a society hold true to the principles of the Americans with Disabilities Act (ADA) and the U.S. Supreme Court Olmstead decision which make the needs and choices of individuals paramount in the design of public accommodations for people with disabilities.

…[We] urge you to remember the people we serve as you craft policy, namely individuals with intellectual disabilities, many of whom have severe and profound intellectual and physical handicaps accompanied by complex medical and/or behavioral conditions.

A significant number of the individuals we serve choose and require the life-sustaining care only possible in large congregate care settings such as ICF/IID homes. The ability to efficiently share expert staff such as licensed nurses, therapists and direct care professionals and to provide a central location for medical specialists and dentists to hold clinics, allow individuals in these settings to receive the care they need in the most effective way to the taxpayer. Breaking up these settings is akin to tearing apart the Intensive Care Units of hospitals and spreading out fragile patients inefficiently across a community. It just wouldn’t be done if high quality, compassionate care at the most reasonable cost is the goal.

Opponents of ICFs/IID homes, unable to argue against these obvious merits, attack ICF/IID homes by stigmatizing them as “segregating.” …A large ICF/IID setting has the training and resources, both manpower and transportation, to ensure regular community outings for this level of need. … That’s why for some individuals, an ICF/IID home offers the greatest opportunity for integration into the community.

The U.S. Supreme Court understood these concerns and foresaw the possibility of a campaign to force all individuals into community settings regardless of individual need and choice. The Court was compelled, therefore, to strongly re-affirm the importance of institutional care:

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead v L.C. 527 U.S. 581, 601-02 (1999)

Your letter to Governors addresses new CMS regulations connected to HCBS settings….

There is a great deal of controversy surrounding these regulations and the degree to which they limit the rights of individuals with I/DD to make their own choices about where to live, work and with whom to associate, especially if the choice is a disability-specific HCBS intentional community or work setting. No other group of American citizens faces such restrictions on their personal autonomy. We hope you take the comments and concerns of constituents into account as you ensure CMS rules respect disability law and individual rights.

While ICF/IID homes are not regulated by the new CMS rules for HCBS settings, they are affected by them. These new regulations marginalize fragile ICF/IID residents by labeling their homes as “isolating,” and prohibiting HCBS residential and work settings to be operated on or adjacent to ICF/IID campuses. The hypocrisy inherent in such policy should be evident to all – we are going to label ICF/IID homes as isolating while we isolate them. 

And who does such policy isolate and marginalize? It marginalizes individuals with severe and profound intellectual disabilities, severe maladaptive behaviors, autism, quadriplegia, epilepsy, non-verbal, tube-fed, many with tracheotomies and dependent upon ventilators, to name only a few conditions common among residents of ICF/IID homes…

We urge you to keep the needs and rights of individuals choosing large congregate care settings such as ICF/IID homes, HCBS intentional communities, sheltered workshops and facility-based day programs, in your mind and heart as you continue Medicaid’s commitment to the most vulnerable citizens of our society. Please remember the people for whom Medicaid was first intended. Their voice may be small in terms of decibels and votes, but the fortitude and goodness with which they lead their lives is boundless. We can all learn a great deal from them and we have a duty to protect them.

Caroline A. Lahrmann, VOR President

CC: Nation’s Governors


Read the full text of the letter here...

Who will hear the voices of people with DD and their families above the noise of the health care debate?

The following is a letter to the editor that comes by way of the VOR Weekly Update for May 26, 2017.


May 25, 2017
Letter to the Editor, 

As debate surrounding the American Health Care Act (AHCA) continues in the commotion of Washington and the clamor of local town hall meetings, it becomes apparent that even in the midst of profound disagreement, all can agree that the proper way to garner support is by speaking the loudest. In such an economy of noise, however, what happens to those whose voices fail to gain an ear?
Individuals with intellectual and developmental disabilities (I/DD) have traditionally struggled to be heard in national health policy conversations. And amidst the din of the current debate surrounding pre-existing conditions and insurance premiums, discussion of the potential damage to the I/DD community that would be wrought by the AHCA’s congressional approval has gone relatively unheard.

The significant proposed cuts to Medicaid would jeopardize access to basic healthcare services for the I/DD community, many of whom have significant physical conditions in addition to intellectual impairments. Funding for caregivers would likewise be slashed, threatening access to both home care and social programming crucial to the physical and emotional well-being of those with I/DD. Special education funding in public schools could also be dramatically reduced, subverting the attempt to provide early and effective educational opportunities that allow these individuals to lead healthier and vocationally meaningful lives. 

Regardless of readers’ political inclinations, it is important that all at least hear this message and consider the implications of the proposed AHCA on the I/DD community, whose voices demand attention even (and especially) when they seem lost in the noise.

Ben Frush

Chapel Hill, North Carolina

Thursday, May 25, 2017

FYI: Background information on Michigan's infamous Section 298 regarding funding of CMH services

May 25, 2017

This is background information from the Michigan Department of Health and Human Services with links to reports and the text of the proposed FY18 budget. Opinions vary on the intent of the initiative and whether it will be a benefit to the people served:

Background on the Section 298 Initiative

The Section 298 Initiative is a statewide effort to improve the coordination of physical health services and behavioral health services. The initiative started with the publication of the 2017 executive budget, which sparked a statewide discussion on the best approach for coordinating physical health services and behavioral health services. In order to facilitate this discussion, the Lieutenant Governor called an initial meeting of stakeholders, which resulted in the formation of the original 298 Workgroup. This workgroup met five times from March 2016 to June 2016 and produced a final report. This final report included final language for Section 298, a set of “core values” for the initiative, and a set of “design elements” for future discussions.

The Michigan Legislature used the recommendations from the original 298 Workgroup to create a Section 298, which was approved as part of Public Act 268 of 2016. Under the new Section 298, the Michigan Legislature directs the Department to develop a set of recommendations “…Regarding the most effective financing model and policies for behavioral health services in order to improve the coordination of behavioral and physical health services for individuals with mental illnesses, intellectual and developmental disabilities, and substance use disorders.”

The Department convened a new 298 Facilitation Workgroup to assist with the development of the report. The Department and the 298 Facilitation Workgroup have also hosted a series of Affinity Group meetings across Michigan to inform the development of the recommendations. 1,113 Michiganders participated in this process during 45 separate meetings. The Affinity Group meetings included individuals, families, providers, payers and advocates. The Department and the 298 Facilitation Workgroup used the input from these discussions to inform the development of the recommendations.

The Department ultimately submitted two reports to the legislature. The first report was an interim report that was submitted on January 13, 2017. The interim report focused on recommendations for policy changes. The second report was a final report, which was submitted on March 15, 2017. The final report includes the initial policy recommendations and incorporates recommendations on financing models and benchmarks for implementation.

Michigan: Action Alert from CMH Board Association

May 25, 2017

The following is an Action Alert from the MACMHB regarding budget negotiations that affect Community Mental Health services for people with DD and other vulnerable populations:

Action Alert from the Michigan Association of Community Mental Health Boards
May 2017

As you know, both the House and Senate have passed their FY18 budget recommendations. Now legislative leaders will come together to mold their two separate budgets into one compromised budget bill for FY18. These discussions will begin to heat up again this week and should be finalized sometime over the next three weeks.

Now is not the time to ease up, we must have a strong finish to our advocacy efforts. Thanks to your help our last two ACTION ALERTS generated over 2000 emails to House and Senate offices – we need to do even better with this next one!!

REQUEST FOR URGENT ACTION: Please contact your House and Senate members urging them to make sensible changes to the final 298 boilerplate language. Timing is critical, we have roughly three weeks to put pressure on lawmakers as they finalize the FY18 budget. We are asking that you reach out to your lawmakers between now and June 2, urging them to remove the Senate language in Section 234 and to not include health plan run pilot programs in the final version of section 298.

We also need you to ask that the members of your Board of Directors, your staff, and your community partners make those same contacts – SIMPLY FORWARD THEM THE ACTION ALERT. These contacts are critical, legislators must hear from us in order to counter the efforts by others opposed to the public management of the state’s publicly sponsored behavioral health and intellectual/developmental disability services and supports system.

Below are quick talking points: 

REMOVE LANGUAGE – Section 234 of the Senate DHHS budget, specifically language referring to total Medicaid benefit and financial integration by 9/30/20, which would transfer all Medicaid resources to Medicaid Health plans.

This language predetermines the outcome of the process without any input from pilots or other measurables and completely ignores the 298 workgroup process and the will of the people.

INCLUDE LANGUAGE – Ensure that the policy and management role for Michigan’s Medicaid behavioral health and intellectual/developmental disability services and supports system remains public.

Concerns Regarding a Health Plan Run Pilot 
  • Health Plans do not have a good track record managing behavioral health services 
  • Mild/moderate services track record 
  • Duals initiative 
  • Less money available for services 
  • Higher overhead cost 
What are we trying to accomplish? 

What are we measuring? Outcomes/metrics? 

Click the link below to log in and send your message: 


This is from an email I received with the names of specific legislators who will be making decisions as to changes in proposed wording for the FY18 budget:

Senate-Health and Human Services
Appropriation Sub-committee

Dave Hildenbrand (R), Full Appropriation Committee Chair, 29nd Distric-Conference Committee

Jim Marleau (R) 12th District-Conference Committee

Vincent Gregory (D), Minority Vice Chair, 11th District-Conference Committee

Peter MacGregor (R), Vice Chair, 28th District-Conference Committee ?

House-Health and Human Services
Appropriation Sub-committee

Laura Cox (R), Full Appropriation Committee Chair, 19th District-Conference Committee

Edward Canfield (R) Committee Chair, 84th District-Conference Committee

Sue Allor (R) Majority Vice-Chair, 106th District-Conference Committee

Pam Faris (D) Minority Vice-Chair, 48th District-Conference Committee

Michigan: Budget negotiations and radical changes to DD service delivery

May 25. 2017

Where to start? The Michigan legislature is considering a radical change in how services for people with developmental disabilities, mental illness, and substance abuse disorders will be delivered and who will be in control of the Medicaid dollars that pay for those services. The intent of proposed legislation is the eventual privatization of mental health services by “integrating” mental health and medical Medicaid services under the control of Michigan’s private Medicaid Health Plans. 

This intent of the Governor was spelled out clearly more than a year ago by the governor’s proposed budget for Fiscal Year 2017:

“…the FY17 executive budget recommendation includes section 298 of the Michigan Department of Health and Human Services Budget - a proposed change without any initial research or analysis that would transfer management responsibilities of all Medicaid behavioral health dollars ($3 billion) from the current publicly managed PIHP system to the privately managed Medicaid health plans by the end of FY17. This change would significantly harm an already underfunded system of care for Michigan's most vulnerable citizens.”

The plan that was proposed in 2016 was met with almost universal opposition from people receiving services through the Community Mental Health system, advocates, providers, and CMH agencies throughout the state. This was enough to halt the plan in its tracks, form various committees and workgroups to study the problem and submit reports to the legislature for consideration of this year’s budget negotiations.

The plans set forth by the Governor and the legislature for future fiscal years have changed in the details, but not in their intent. Privatization is the goal and the way to reach this goal has been laid out in proposed legislation. Many, many words, letters, emails, and phone calls have been exchanged trying to make sense of these proposals and assure that the people affected by them are heard and that their views are taken into consideration. Whether that will be the case remains to be seen.

The budget negotiations and the news about them from Lansing are overwhelming and confusing. Part of the problem for me and for many families of people living with severe disabilities is that real life keeps intervening. In my case, it mostly has to do with my older son’s struggle with seizures. I have decided to start with the present and work backwards to find ways to explain what is going on with the state and how it is affecting people at the local level.

In an article in the Ann Arbor News, “Lawmakers say mental health cuts put Michigan counties in a bad spot” by Ryan Stanton, 5/23/17, local legislators discuss the harmful effects of past actions by the state legislature
and current proposals that make it increasingly difficult for local agencies to meet the needs of people with DD, mental illness, and other vulnerable populations:

"...Cuts at the state level in recent years already have created a crisis for community mental health service providers across Michigan, putting counties in a bad spot, [legislators] argued Monday night, May 22, during a legislative forum hosted by Washtenaw County's Office of Community and Economic Development.

"GOP lawmakers in Lansing are now considering further changes to how mental health services are provided in Michigan, and Democrats fear it could essentially lead to privatization of community mental health by 2020.

"Rep. Adam Zemke, D-Ann Arbor, said a lack of state general fund support for mental health is having devastating consequences, and counties are asking local taxpayers to dig deeper into their pockets to fund vital services.”

In past years, while Medicaid was the main source of funding for mental health services, dollars from the state’s General Fund could be used to pick up the slack for people who were not eligible for Medicaid but were nonetheless in need of services for medical care, job support, psychiatric care, and programs to prevent homelessness and incarceration. Recently, available General Fund resources have been shrinking drastically:

“Washtenaw County Community Mental Health's state general fund allocation has dropped from $6.5 million in 2014 to $2.7 million as of 2017.
“As a result, county officials say, critical treatment and services for highly vulnerable citizens have been reduced or eliminated, and WCCMH  is currently wait-listing people who are uninsured or underinsured.”

State Senator Rebekah Warren, D-Ann Arbor, voted against the Senate budget plan that calls for privatization of community mental health programs by 2020:

"'We were being sort of sold a promise that they will be able to deliver more care for more people with less money and I'm not exactly sure how they think they can do that, but that's kind of the promise.'"

Washtenaw and other Michigan counties are considering ballot measures for increasing local property taxes to pay for the lack of state general fund dollars and potential decreases in federal Medicaid funding for crucial services. This seems to be a stopgap measure to fund services, but is not a longterm solution. Legislators continue to seek tax cuts even as the demand for services for vulnerable populations increases along with the public’s demand for infrastructure improvements that have been neglected for years.

Monday, May 15, 2017

Person-Centered Planning, Guardianship, and Supported Decision-Making

Spring in Charlevoix, MI
In March 2017, the Administration on Community Living sent out a request for comments on “Draft Principles for a Person-Centered Approach to Serious or Advanced Illness”. The announcement said:

At ACL, we believe that every person should be able to make choices and to control their own decisions, regardless of their age, disability, or illness. [emphasis added] ACL, in consultation with stakeholders from the aging and disability communities, has drafted a set of principles to guide our work in this area, and to enhance existing programs and services related to serious or advanced illness for older adults and people with disabilities.”

What’s wrong with this picture? When you read that first sentence do you hear fingernails scraping on the blackboard or is it just me? Why is the ACL conditioning their request for public comments on the agency’s belief that age, disability, or illness do not impair anyone’s ability to make and control decisions? If you read further in the Draft Principles, you will find that this belief is reinforced and is the basis for proposed policy promulgated by the federal government.

If you live in the reality-based world of families of people with severe and profound physical, cognitive, or behavioral disabilities, you know that “belief” does not cause our loved-ones to have abilities they, in fact, do not have, any more than pixie dust allows them to fly. People with disabilities who are able to make and control decisions for themselves, with or without support from others, should be protected and encouraged in their right to do so. But acknowledging that some people do not have this ability, is the first step in protecting them from neglect, abuse, and exploitation.

Below are comments from VOR, a national organization that “advocates for a full continuum of high quality care and human rights for all people with intellectual and developmental disabilities (I/DD)”. As a member of the committee that wrote these comments for VOR, they are also my personal views.


VOR Comments on “Draft Principles for a Person-Centered Approach 
to Serious or Advanced Illness” proposed by the 
federal Administration on Community Living

May 12, 2017

VOR is a national nonprofit organization that advocates for a full continuum of high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).

VOR members include families of people with severe and profound life-long disabilities. Many of our family members with I/DD live in Intermediate Care Facilities (ICFs/IID) and other congregate settings such as skilled nursing facilities and smaller community group homes, while others live at home with their families or in supported living situations. Many function at the level of infants or toddlers or have complex behavioral problems that may endanger themselves or others. Some face serious and advanced illnesses similar to those of the aging population. As the lifetime survival of people with these severe disabilities is extended through improved medical care and other services, more and more people with severe to profound I/DD will face these challenges.

Our disabled family members are a small minority of those served in Medicaid-funded programs but their needs are great. For them to survive unharmed requires comprehensive care and understanding of their intensive needs. Most are unable to make decisions for themselves in some or all aspects of their lives. Many have legal guardians appointed by state courts. Most of the guardians are also family members or friends who know the individuals well and are committed to protecting their interests.

VOR supports the availability of a full spectrum of services and residential options appropriate to the needs of the individual including larger congregate settings as a necessary component of the long-term services and supports (LTSS) system, along with Home and Community Based services that support people in a variety of living arrangements.

Principles related to planning and decision-making:

Comment #1: “Supported decision-making principles and practices should guide those who are helping individuals who need assistance with planning and decision-making. Individual goals, decisions, and known views should take priority. “

Supported Decision-Making is a movement based on a controversial ideology that promotes the idea, that with almost no exceptions, all people with I/DD can make their own decisions with support from an informal network of advisors. With SDM, the advisors are not court-appointed nor do they bear any responsibility for ensuring the success of outcomes. SDM proponents view the “Right to Fail” as an important freedom, regardless of the individual’s ability or vulnerability.

The primary goal of SDM is to move away from “substituted decision-making”, where the guardian makes decisions for the incapacitated ward. This approach would then, in fact, be doing what SDM proponents criticize: substituting the judgment of the incapacitated ward with the judgment of a “support team”. SDM is not, however, a suitable replacement for court-ordered and monitored guardianship for those unable to make or communicate decisions for themselves.

VOR does not oppose the use of Supported Decision-Making for all who voluntarily wish to use methods promoted by SDM advocates. All decisions must rest with the individual or the legal guardian as authorized by a state court and it must be understood that guardianship procedures are available to those who need them, regardless of their participation in SDM activities. As such, there is no reason to give up guardianship in order to use Supported Decision-Making.

For people who have appointed health care advocates or have made other arrangements for others to represent them if they become too ill or too disabled to make their own decisions, advance directives should be honored in the person-centered planning process. The appointed representatives should be allowed to make the decisions that the individual has asked them to make.

Comment #2: “All parties should presume that people with real or perceived cognitive, communication, or intellectual disabilities are able to make decisions.”

The presumption, that all people with cognitive, communication, or intellectual disabilities are able to make decisions, is simply false. The underlying causes of these conditions often result in a person being unable to make or communicate decisions in all or some aspects of their lives. In many instances complex decision-making that takes into account possible harmful consequences is impaired. There must be assurances that the individual’s interests are protected and that they are not subjected to abuse, neglect, or exploitation because of their disabilities.

An analysis of the Americans with Disabilities Act regulations by the U.S. Department of Justice concludes that, “…public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do.” [This is found on Page 193 of Appendix B, a section-by-section analysis Title II of the ADA regulations ; see also The DD News Blog,"What does the ADA 'Integration Mandate' Really Mean?"]

Presumptions that people can make decisions when there is clear evidence that they cannot is a disservice to vulnerable individuals that exposes them to unacceptable risks.

Comment on Principle #4: “Individuals need access to services that enable them to manage their conditions and symptoms, live in the setting of their choice, and be integrated into the community….”

Facilities that provide a higher level of care for people with severe and profound I/DD such as ICFs/IDD and skilled nursing facilities are part of the system of Long Term Services and Supports and should be included in this statement.

These are technically considered institutional placements, but in a 2015 Survey “Giving Voice to Families and Guardians”, VOR found that people living in these facilities and smaller community homes were about equal in the degree of engagement with their communities. Respondents reported that their family members enjoyed an average to high degree of interaction with the broader community away from their ICF and Non-ICF homes (“integration”). [Page 11]

VOR supports person-centered planning principles that acknowledge the full range of needs and abilities for people with I/DD. We support family decision-making consistent with The Developmental Disabilities Assistance and Bill of Rights Act:

“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)


See also, "Issues to Consider Regarding Guardianship and Supported Decision-Making" from VOR and "Understanding Guardianship and SDM" from The DD News Blog 

Thursday, May 11, 2017

Feds extend the date for implementation of the Home and Community-Based Settings Rule to 2022

The Centers for Medicare and Medicaid Services (CMS) has just notified states that they will have until March 2022 to fully implement the 2014 Home and Community-Based Settings (HCBS) Rule. This adds another three years to the initial March 2019 date for states to transition to the new rule, although I hope this will also be a time to reconsider some the rule's more controversial aspects. I have written many blogposts about the rule and some of its harmful consequences. And no, I do not think that these are all unintended mistakes in the way the rule was written. At its worst, the rule is being used to close programs for people with DD in the name of protecting their civil rights and to drive providers out of business who serve people with the most severe disabilities.

Here are excerpts from the Bulletin announcing the change:


CMCS Informational Bulletin
DATE: May 9, 2017
FROM: Brian Neale, Director
SUBJECT: Extension of Transition Period for Compliance with Home and Community-Based Settings Criteria

Health and Human Services Secretary Thomas E. Price, M.D. and Centers for Medicare & Medicaid Services (CMS) Administrator Seema Verma, MPH, issued a letter to the nation’s Governors on March 14, 2017, affirming the continued HHS and CMS commitment to partnership with states in the administration of the Medicaid program and noting key areas where we will improve collaboration with states and move towards more effective program management. One of the areas of the increased flexibility CMS intends to extend to states is in the provision of home and community-based services (HCBS), and this information will provide additional clarity on immediate steps taken to act on that commitment. [emphasis added]

Language in the preamble to the final HCBS regulations governing services provided under sections 1915(c), 1915(i) and 1915(k) of the Social Security Act, in a response to comments submitted on the regulations proposing the settings criteria, recognized that compliance with the new regulations would be a complex process requiring a balancing of interests. As a result, CMS indicated that states were permitted to propose transition plans (i.e., Statewide Transition Plans) encompassing up to five years after the effective date of the regulations for settings reflected in existing state plans and waivers to come into compliance with the regulation.

In recognition of the significance of the reform efforts underway, CMS intends to continue to work with states on their transition plans for settings that were operating before March 17, 2014 to enable states to achieve compliance with the settings criteria beyond 2019. Consistent with the preamble language, states should continue progress in assessing existing operations and identifying milestones for compliance that result in final Statewide Transition Plan approval by March 17, 2019. However, in light of the difficult and complex nature of this task, we will extend the transition period for states to demonstrate compliance with the home and community-based settings criteria until March 17, 2022 for settings in which a transition period applies. We anticipate that this additional three years will be helpful to states to ensure compliance activities are collaborative, transparent and timely.

If you have any questions, please contact Mike Nardone, Director, Disabled and Elderly Health Programs Group, at 410-786-7089. 

See also:

 "Legal Vulnerabilities of CMS’s Regulation of Home- and Community-Based 'Settings'"

"The Olmstead Decision has been Misinterpreted"

Sunday, May 7, 2017

Quotes of the Day

“…Nobody dies because they don’t have access to health care”

Idaho Republican Rep. Raul Labrador 

“Nolite te bastardes carborundorum. Don't let the bastards grind you down.”

Margaret Atwood, The Handmaid’s Tale

Autism Awareness and Bullies on the Playground

May 7, 2017

On the eve of Autism Awareness Month (April 2017), a mother of a six-year old boy with severe autism confronted bullies on the playground. They were not the usual suspects, i.e. adolescent children looking for a vulnerable kid to push around to make themselves feel better. They were instead the parents of a girl who the autistic boy had inadvertently pushed down a slide. The girl apparently was not hurt and did not seem upset. The girl’s parents, however, yelled at the autistic boy and his mother, shouting, “What is the matter with your son? What are you doing here?” The extreme irony in this situation is that the playground was designated as an “inclusive” playground that was built to accommodate children with special needs.

The autistic boy’s mother, explained that her son has severe non-verbal autism and had not done anything intentionally to hurt their child. She apologized more than five times to the parents for his having pushed their little girl down the slide. Meanwhile, her son ran off laughing and playing apparently oblivious to the drama taking place between the parents.

Kate Swenson, the author of the blog “Finding Cooper’s Voice”, posted her emotional account of her encounter with bullies on the playground on her Facebook page. The incident is also the subject of a news article from the Minneapolis Star Tribune (4/7/17). In the video, Kate considered never leaving the house again with Cooper and contemplated her inability to fix the world or even change it very much when it comes to how children like Cooper are treated. 

At one point Kate asks herself, how old will Cooper be when she is fifty or seventy or eighty and will anything have changed? I did those calculations when Danny, my older son with profound DD, was Cooper’s age and now I am up there in that age range. Some things have changed, but many have not. 

When Danny was a young child, he was a screamer and it was next to impossible to take him anywhere for very long that was in a public place. When we did, we always had a well-planned escape route. It wasn’t that we were rebuked by other people for bringing our son into public places; it was that there was very little enjoyment in doing so, either for us or for Danny. At the age of 40, Danny still does much better in more controlled settings where the care that he always needs is immediately available and he doesn’t have to depend on the kindness of strangers for his enjoyment of life.

I get annoyed when advocates of full inclusion expect all of our family members with disabilities to put themselves out there in public view to teach ordinary people about the accomplishments of people with disabilities. Encountering Danny may teach them something about tolerance and the human condition and what it means to carry on, as Danny has for forty years, having to rely fully on others for his most basic needs.

As an example of Danny’s fortitude, he was in the ER last night with uncontrolled seizures, again. In between small 10-second seizures, he managed to make funny clucking sounds and smile broadly when I played a Youtube video of a Cockatiel who had learned to whistle the theme song from the Addams Family. How many of you out there would be up to that after two hours of intermittent seizures??

A random person at a shopping mall who encounters Danny is likely to be more overwhelmed by how different he is than your ordinary forty-year-old than to recognize his accomplishments. Or, if he is screaming, it is also possible, that he or she might be as angry as those parents on the playground who demanded to know why Cooper was allowed at the special needs inclusive playground. Or, if we were lucky, we might encounter someone who has an aunt with cerebral palsy, or a grandmother with dementia who is taken care of by another family member, or the mother of a child with Down syndrome who will likely never be a TV star. At that moment, Danny only has to be himself to let others in the same boat know that they are not alone.

I suspect that Kate and her son will leave the house and go back to that playground, Cooper’s favorite place to play. She should always remember that ugly incident with the image of the those parents juxtaposed with the sign explaining the reason for building an inclusive playground. And I hope that the next time she is out there, she meets a parent with a boy who has spent his morning lining up chairs against the living room wall as Cooper does in Kate’s video.


Finding Cooper's Voice by Kate Swenson