Friday, July 19, 2019

IACC Workshop: Addressing the Housing Needs of People with Autism, 7/23/19

The Interagency Autism Coordinating Committee (IACC) is holding a workshop to address the housing needs of people on the autism spectrum on 7/23/19:

Tuesday, July 23, 2019

Hilton Washington DC/Rockville Hotel and Executive Meeting Center 

1750 Rockville Pike 
Plaza Ballroom 
Rockville, MD 20852 

9:30 to 4:30 pm

“The purpose of the 2019 IACC Workshop, Addressing the Housing Needs of People on the Autism Spectrum, is to convene a working group of the IACC that will focus on housing needs of people on the autism spectrum. The workshop will be open to the public, will include time for public comments, and will be accessible by live webcast and conference call. "

Remote Access:

Conference Call:
Dial: 888-946-9416
Access code: 1391703 (listen only)


It is too late to submit a request to make oral or written comments to the committee during the 7/23 meeting, but truth be told, any member of the public can submit comments in writing to the IACC at any time. You can also listen in by phone or webcast.

Contact information:

Ms. Angelice Mitrakas
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 7218
Rockville, Maryland 20852
Phone: 301-435-9269

Partial agenda that will include discussion of Intentional Community models:

Overview of Housing Issues

10:00 Status and Trends in Supports and Services from the Residential Information Systems Project
Heidi Eschenbacher, Ph.D.
Researcher, Institute on Community Integration, University of Minnesota

10:15  Trends and Insights from the Autism Housing Network
Desiree Kameka, M.T.S.
Director of Community Education & Advocacy, Madison House Autism Foundation 

10:30  Discussion of Public Comments

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC

Oni Celestin, Ph.D.
Science Policy Analyst, Office of Autism Research Coordination, NIMH

Intentional Community Models

1:00 Live. Learn. Lead. We’re the place for that…First Place AZ
Denise Resnik
CEO and Co-Founder, DRA Collective, Phoenix, Arizona

1:10 Benjamin’s Hope: a "Live, Learn, Play, Worship" Community Where People with Autism Enjoy Lives of Dignity and Purpose
Krista Mason
Executive Director, Benjamin’s Hope, Holland, Michigan

1:20  From House to Home: Thriving with Autism at The Center for Discovery
Terry Hamlin, Ed.D.
Associate Executive Director, Center for Discovery, Harris, New York

1:30 Organizing for Inclusive Community: Leveraging Partners and Policies to Make More Possible
Lindsay Johnson
Director of Policy and Partnerships, The Kelsey


"The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The committee reconvened in November 2015 to begin a new session under the Autism CARES Act."

Wednesday, July 10, 2019

Delaware families lead the way for better pay and working conditions for caregivers


A Delaware advocacy group, Families Speaking Up , has been renamed A-Team Delaware, joining a national movement for choice in day and residential services.

From the Website:

"If you haven’t heard, Families Speaking Up has rebranded as A-Team Delaware. We are excited to be taking the grass-roots work we’ve been doing for the last several years statewide, with one chapter that meets in New Castle County and one that meets on the border between Kent and Sussex Counties. As one of the newest A-Teams in the United States, we have become a part of the national movement for choice in day and residential services. We would encourage you to visit for more information about the other states that have joined this movement. Although our name has changed, our goals remain the same — to ensure that all voices are heard when policies are being made that affect people with intellectual and developmental disabilities and their families."

Delaware is experiencing the same crisis in caregiving for people with intellectual and developmental disabilities (I/DD) as the rest of the country. Low pay and poor working conditions for Direct Support Professionals (DSPs) have resulted in extreme difficulty in hiring qualified people as caregivers and rapid turnover of workers. Families and other advocates thought they had found a solution when legislation passed last year to fully fund the needs of I/DD adults:

"The McNesby Act passed unanimously in 2018, which promised full funding for adults with I/DD in the next three years. Direct Support Professionals are an endangered workforce in Delaware and often leave the jobs they love for higher paying jobs in other industries. It has reached crisis levels and the Joint Finance Committee only put a Band-Aid on the wound yesterday. 

 "Wearing our green shirts, we held our rally and sat in Legislative Hall during the FY 2020 budget markup for several days. Despite our best efforts, only $2.2 M was added to $1.8 M in the budget for a total of $4 M. Read this press release from the Ability Network of Delaware to learn more."

This disappointing turn of events was followed up by an opinion piece at Delaware Online by Micki Edelsohn, "Be fair to those who care for adults with intellectual disabilities", June 12, 2019: 

Although our son Robert has an intellectual disability due to a difficult birth, our goals for Robert were the same as our older son, Andrew: to get the best education, reach his potential and someday live in his own home, have a job and enjoy his community.

While Robert was still in school, we began our dream of raising the funds to build a group home where he could live with his peers, with staff support. In February 1990 a miracle happened: a chance meeting with Charlie Cawley, former CEO of MBNA America Bank. After learning of our plans, to our amazement and delight, he committed that MBNA fund the first group home and, in addition, hire the residents.

That initial home was the catalyst. We established a non-profit, Homes For Life Foundation and created a partnership. Homes For Life raised the funds and deeded the debt-free homes to the Arc of DE. State government then contracted with provider agencies to hire the direct support professionals (DSP’s) to support the residents.

It was a win-win for the families and for the state, now given affordable housing.

Thirty years later, Homes For Life has built 25 group homes and purchased two condos where 104 adults with intellectual/developmental disabilities (I/DD) live. One thing has become very clear, the home is worthless without the dedicated direct support professionals, whose job it is to provide the appropriate support needed.

But today, the State of Delaware has turned its back on the agencies that provide the workforce to care for the most vulnerable people in our society. DSPs have not been paid a living wage.

The state’s payments to these non-profits only support a wage of $9 an hour. One agency lost 95 percent of their DSPs last year due to low wages; another had a turnover rate of 87 percent, and the turnover rate for most agencies is around 50 percent a year.

Even the most effective business leader could not operate in an environment with a turnover of employees at such high levels.

In 2018, the Michael McNesby Full Funding for Adults with I/DD Act was passed unanimously by both houses of the General Assembly and signed into law with great fanfare by Governor Carney. The Act ensures that funding for services be brought up to levels recommended by the Department of Health and Social Services (DHSS), namely $42 million over the next three years.

Despite the need for $14 million dollars this year and the promise made, only $4 million is in this year’s budget.

Without properly paid direct support professionals, the residents cannot survive. The beautiful neighborhood homes will slowly disappear — homes worth millions of dollars, with contributions by hundreds and hundreds of donors (individuals, corporations and foundations) hoping to give a “home for life” to an adult with I/DD.

How can this happen? Gov. Carney and our legislators must fulfill their promise to fully fund the McNesby Act. The lives of our loved ones with I/DD are at stake.


Teaming up with a national movement for choice, green T-shirts, rallies, opinion pieces and letters to the editor and legislators, and a great big billboard advertising the cause ... This is a great example for other family advocacy groups to follow.

Micki and Lanny Edelsohn are founders of the Homes for Life Foundation in Wilmington Delaware.

Tuesday, July 2, 2019

VOR: Celebrating the 20th anniversary of Olmstead

VOR acknowledges the 20th Anniversary of the Olmstead Decision and celebrates in its opening doors to community living for people with intellectual and developmental disabilities (I/DD) who are able and wish to take advantage of such opportunities. The Court’s decision in Olmstead was balanced and comprehensive. It presented a road map for how to meet the aspirations of those seeking inclusion while protecting the needs of those with more severe intellectual disabilities. VOR is proud of the role that we played in presenting an amicus to the court, showing the need to include all people with I/DD in their ruling. 

Recently, the Department of Justice (DOJ), and the Administration for Community Living (ACL) issued press releases celebrating the 20th Anniversary of the Olmstead decision. Unfortunately, their ideological focus with one key part of Olmstead, “community integration”, at the expense of the other key part, “choice”, has reduced options for all people with I/DD and especially those with the most severe and profound forms of I/DD. Whether or not this is an innocent misreading of the ruling or a deliberate misrepresentation of the Court’s opinion, this limited interpretation of the plain language of Olmstead has done significant harm to many of our most disabled citizens. 

By insisting that all people with I/DD live in the community, the DOJ and ACL are treating people with I/DD as a monolithic group, not as unique individuals. DOJ and ACL are substituting the wishes of the government for that of the person with I/DD or, where relevant, the parent or legal guardian. While their policies have opened doors for the less severely disabled, they have closed important doors for the more severely disabled. Many of these individuals have lifelong needs that require a very high level of care, the kind often found only in public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). 

DOJ and ACL are pursuing this agenda in the name of the ADA and Olmstead, but that is not what the ADA and Olmstead call for. Both the statute and the Supreme Court case embody the best values of American society —nondiscrimination and choice. All of our civil rights laws contain both elements. Civil rights laws do not tell people where they must live or work. They guarantee individuals are not denied opportunities based on a particular factor, and they expand choices for individuals who have suffered discrimination. In sharp contrast, DOJ and ACL are using federal dollars to bring lawsuits and promote policies that needlessly and dangerous eliminate important options – ICFs/IID, sheltered workshops and facility-based day programs – that many of our most disabled individuals rely on and prefer over small community residences. 

In pursuing a one-size-fits-all ideology, DOJ and ACL are ignoring the vital rights of choice embodied in the ADA itself: As the Court clearly stated in Olmstead: 

“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, 601-602 (1999). 

In fact, the Court specifically incorporated the right of choice in the second prong of its holding: 

“(b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual,” Olmstead, at 587

Even DOJ and ACL’s concept of what constitutes the most integrated setting contradicts the view of Justice Ginsburg: 
“[For some individuals, no placement outside the institution may ever be appropriate. ‘Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times - perhaps in the short run, perhaps in the long run - for the risks and exposure of the less protective environment of community settings;’ for these persons, ‘institutional settings are needed and must remain available.’ ” . . . Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing on a case-by-case basis, that setting may be an institution” Olmstead, at 605. 
 Not only are DOJ and ACL ignoring the plain language of governing law and decision, they are ignoring the harmful effects of their policies. Journalists have time and again documented the high rates of abuse and mortality for our most disabled citizens who have been forced out of congregate care facilities into unprepared communities. Federal agencies should stop dictating the lives of the severely disabled, and instead, join hands with the community of individuals with I/DD to ensure that all people with I/DD receive quality services and supports wherever they choose to reside. 

The ADA and Olmstead are the beacons for providing more opportunities for people with I/DD, but they do not dictate one-size-fits-all solutions. They are to provide rights and protection for everyone. 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. 

VOR is a national organization that advocates for high quality residential and work options and human rights for people with intellectual and developmental disabilities. Established in 1983, VOR is a 501(c)(3) non-profit organization, governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support. 

Thursday, June 27, 2019

A Critique of the Proposed Disability Integration Act

June 27, 2019 
by Jill Barker, mother of Danny and Ian Barker 
Ann Arbor, Michigan 

The Disability Integration Act (DIA) of 2019 is a bill that has been introduced in the U.S. Senate (S. 117) and in the U.S. House of Representatives (H.R. 555) “to prohibit discrimination against individuals with disabilities who need long-term services and supports, and for other purposes.” Discrimination on the basis of disability is already prohibited under numerous laws, regulations, and court decisions going back to the 1970’s. It is the “other purposes” of the proposed law that cause alarm, especially when overly prescriptive policies override the judgment of individuals and their families in determining the needs of people with disabilities. 

The DIA attempts to promote and impose an ideology of full inclusion on all people with disabilities. It envisions “full integration in the community” for everyone, regardless of their need for specialized treatment and care or their preferences for how and where services are delivered. Considering the full range of need and the diversity of people with disabilities, most may desire “full integration in the community”, but for some, a fully integrated life in the community may not be possible or desirable. 

In the disability community, there are fierce debates over how and where people with disabilities should live and receive services. The DIA does not reflect the full range of perspectives on these issues, especially my own views and those of many others who have family members with severe and profound intellectual disabilities. Missing from the debate, as far as this piece of legislation is concerned, are people with disabilities and their families who rely on and benefit from the programs, services, and residential options that this bill would eventually eliminate.

The advocacy groups that worked on this legislation are ideologically opposed to institutions and all other congregate residential or work settings, regardless of the needs or preferences of individuals and their families. 

Let me introduce you to my sons, Danny and Ian

Danny is 42 years old and has severe cerebral palsy, profound intellectual disabilities, intractable seizures, reflux, a permanently dislocated hip, a feeding tube, and a severe visual impairment. He is unable to communicate in any specific way, although we know when he is feeling good and when he is not. He experiences frequent medical crises - in 2017, he was treated in the Emergency Department at the University of Michigan more than 15 times for seizures that would not stop and five times for aspiration pneumonia, for which he was hospitalized. He lives in a community group home with five other people with disabilities with similar needs. Despite the severity of his disabilities, he is happy and content with his living situation and gets a great deal of love and attention in that setting. 

My son Ian is 34 years old and had problems at birth similar to those of his brother. He has disabilities as profound as Danny’s and, like Danny, he needs total care. He is unable to recognize dangerous situations, much less to protect himself from them. He shares a room with his brother in the same group home where they receive good care, but the continued availability of that care is precarious due to our chronically underfunded mental health system. Their direct care workers perform difficult jobs that are undervalued and often unrecognized for their importance. My sons’ need for 24/7 care and supervision is dependent on the group home receiving adequate funding and support. 

Direct harmful effects of the DIA on Danny and Ian 

The DIA arbitrarily proposes to redefine Home and Community-Based Services (HCBS) so that my sons’ group home would no longer be considered "Community-Based". [See the DIA, page 9, where the definition of a community-based dwelling “…is a group or shared residence…in which no more than 4 unrelated individuals with an LTSS disability reside..” ] If adopted, there is no reason to think that HCBS Medicaid funds would continue to support their group home. It would increase the instability of the current system of care, increase costs, and drive service providers out of business, because the four-person limit denies possible economies of scale to control operating costs. 

General harmful effects of the DIA 

The effect of the “community integration for all” approach in the DIA will result in making specialized services difficult to access. People with disabilities will have to justify, not just that a service is appropriate to their needs, but that it is also used by people who are not disabled. If one receives dental services at a clinic that specializes in serving the needs of people with intellectual and behavioral disabilities, it should not be necessary to prove it is integrated by showing that people without those problems also use the clinic’s services. 

The DIA imposes a goal of independence on many individuals for whom a limited degree of independence or none at all may ultimately be achievable. No federal law should impose or assume goals that do not reflect individual abilities and needs. [On page 11 of the DIA, the definition of “an individual with an LTSS disability” makes the assumption that an independent life is achievable regardless of the person’s disabilities.] 

Under the DIA, decisions for how and where people with disabilities live and receive services will be imposed by federal policy rather than allowing the judgment and experience of people with disabilities and their families, and others who know them, to be the basis of those decisions. 

The proposed DIA promotes the notion that money will be ”saved” by eliminating institutions (Intermediate Care Facilities for Individuals with Intellectual Disabilities - ICFs/IID), skilled nursing facilities, group homes serving more than four individuals, and other congregate settings. The presumed savings would enable the states to expand services to more people in community settings, but at the expense of those with the greatest needs. Despite the shift of Medicaid funding to community settings from institutions, waiting lists have soared and the “savings” to serve more people with disabilities have not materialized. According to the UCP Case for Inclusion 2019, page 9, spending doubled on Home and Community based services from 2006 to 2016, the number of people living in larger state institutions was cut in half, while waiting lists for services tripled

Non-existent and poor quality services as well as unsafe and unaffordable housing for people with disabilities in the community are staggering problems throughout the country. This legislation would likely push states to move people, often against their will, into unsafe and unprepared communities from congregate settings without dealing with the reality of the present crisis in community care. 

The DIA, the ADA, and Olmstead 

The Americans with Disabilities Act regulations on discrimination state that, “A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” [emphasis added]. This makes clear that the appropriateness of the setting to the individual is of primary importance. The DIA uses the phrase, “most integrated setting” five times and each time it leaves off the phrase “…appropriate to the needs of qualified individuals with disabilities”. Why? Does consideration of the appropriateness of a setting to the needs of the individual conflict with the ideology of “full inclusion” and “community for all”? 

Under Findings and Purposes, the DIA assumes that placement in an institution such as an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) or other congregate setting of more than four people with disabilities is inherently discriminatory. This is not consistent with the ADA or the U.S. Supreme Court Olmstead decision interpreting the ADA: 
  • The ADA does not restrict individuals from receiving needed services in specialized settings for people with disabilities nor does it allow public entities to prevent access to services and benefits available to all. 
  • The 1999 U.S. Supreme Court Olmstead decision affirms this interpretation of the ADA and includes protections and choice for people in institutional settings and those needing an institutional level of care. 
The DIA violates existing law, in that it specifically states that it would eliminate institutions (pp. 21 & 32-33) and thus restrict a State’s ability to maintain a range of options for the care and treatment of people with a diversity of disabilities: 
  • "Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." (Olmstead v. L. C., 527 U.S. 581, at 597)
  • “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, at 601-602)

Let’s look before we leap. Legislation that is this sweeping and that affects so many vulnerable people who are already at the mercy of others who would exploit them for their own purposes, should not go forward without a full analysis of all its intended and unintended consequences. Most importantly, for these most vulnerable people, FIRST, DO NO HARM.

[This post was updated for clarity on 7/2/19, but the substance remains the same. JRB]

Tuesday, June 25, 2019

The True Meaning of the U.S. Supreme Court Olmstead Decision

Together For Choice

June 25th, 2019 

Together For Choice (TFC) is an advocacy organization based in Chicago but with members from all over the country. According to its Website,

"Together for Choice was organized by providers and families across the country seeking to enhance the right of individuals with developmental disabilities to choose where to live and how to spend their days. We stand for the proposition that individuals with developmental disabilities should have the same rights as everyone else to decide where to live, work, recreate and receive services." live a life worth living

TFC held a conference in the Fall of 2018 at Misericordia, a facility in Chicago operated by the Sisters of Mercy under the auspices of the Catholic Arch Diocese of Chicago. It is a 501(c)(3) not-for-profit corporation that is funded partly with public funds, including Medicaid, from the Illinois Department of Healthcare and Family Services, the Department of Children and Family Services and the Illinois State Board of Education in addition to funds raised through private donations.

Misericordia serves 600 people with moderate to profound disabilities, on and off campus. If you are in Chicago and have a chance to visit, it is a fine example of the variety of good quality residential and work programs that are possible for people with I/DD.

The 2018 conference hosted a wide array of speakers. You can listen and watch videos of the speakers here.

To make sense of the acronyms used in regard to people with disabilities, here is a helpful glossary from the TFC blog:

ADA = Americans with Disabilities Act

A federal law enacted in 1990 that protects people with disabilities from discrimination.

ASD = Autism Spectrum Disorder

A developmental disability affecting communication, behavior, and social interaction. ASD has wide variation in type and severity of symptoms experienced.

AT = Assistive technology

Any item, piece of equipment, software program, or product system used to increase, maintain, or improve the functional capabilities of people with I/DD. Can be a low-technology item (e.g., communication board with fuzzy felt) or involve special computers and software.

CMS = Centers for Medicare and Medicaid Services

Part of the U.S. Department of Health and Human Services that oversees federal Medicare and Medicaid policy and states’ implementation.

DSP = Direct Support Professional

A professional who supports with people with disabilities accomplish activities of daily living.

FLSA = Fair Labor Standards Act

The law that establishes minimum wage, overtime pay, record-keeping, and standards for child labor, which pertains to full-time and part-time workers in federal, state, and local governments as well as the private sector. The 14(c) provision of the FLSA offers a certificate to employers to hire people with disabilities and pay them in proportion to their level or productivity.

HCBS = Home- and Community-Based Services

Services funded by Medicaid to provide people with I/DD, physical disabilities, and/or mental illness supports in community-integrated settings.

HHS = (U.S. Department of) Health and Human Services

The cabinet-level department that oversees social service programs including many I/DD services. The Secretary of HHS is appointed by the president and confirmed by the senate.

I/DD = Intellectual and developmental disabilities

An umbrella term describing disabilities that affect cognitive, physical, and/or emotional development. Diagnoses of I/DD are always present before age 18 and are often present from birth.

ICF/IID = Intermediate Care Facility for Individuals with Intellectual Disabilities

A residential setting funded by state Medicaid entitlements (separate from HCBS). ICF/IDDs are larger settings than typical homes and typically support people with higher support needs.

IDEA = Individuals with Disabilities Education Act

A law that allows for a free and appropriate public education to eligible children with I/DD and ensures special education and associated services to those children.

PCP = Person-centered planning

An approach to engaging with people with I/DD to help them identify their strengths and use that information to design the best plan with appropriate supports for a successful and fulfilling life.

PCPID = President’s Committee for People with Intellectual Disabilities

A committee appointed by the President to advise the White House and HHS on issues related to I/DD.

QIDP = Qualified Intellectual Disabilities Professional

A license offered through state human services departments for case management staff supporting people with I/DD

VR = Vocational rehabilitation

Services offered to people with I/DD to enable them to obtain the skills and resources needed to find and keep employment.

WOTC = Work Opportunity Tax Credit

A federal tax credit available to employers that hire individuals from certain groups who have consistently faced significant barriers to employment, including people with I/DD.

Monday, June 24, 2019

Rerun from The DD News Blog: How to complain to get what you need and want

This is a DD News blog post from 9/13/18. It seems particularly relevant in times when services are dwindling and threats abound that things will never get any better and, in fact, will probably get worse. We all need to hone our skills and not let a dysfunctional system of services for people with intellectual and developmental disabilities off the hook. The moral and practical justification for supporting people with IDD, wherever they live and receive services, has been clear for decades. The attempt by public agencies and policy makers to shed responsibility for this endeavor is an unnecessary cause of suffering and lost potential for individuals with disabilities and their families.


In Defense of Complainers

Complainers are often seen only in a negative light - annoying pests to be avoided at all costs. But constructive change almost always begins with a complaint of some kind from a person who has been wronged or has seen mistreatment of others that offends their sense of fairness and justice.

The following is from “The View from Flyover Country: Dispatches from the Forgotten America”, by Sarah Kendzior, page 224:

“The surest way to keep a problem from being solved is to deny that problem exists. Telling people not to complain is a way of keeping social issues from being addressed. It trivializes the grievances of the vulnerable, making the burdened feel like burdens. Telling people not to complain is an act of power, a way of asserting that one’s position is more important than another one’s pain. People who say ‘stop complaining’ always have the right to stop listening. But those who complain have often been denied the right to speak.”

Sarah Kendzior is a journalist who makes her home in St. Louis, Missouri. Her collection of “Flyover Country” essays cover a broad range of topics. None of them are specifically about disability issues, but many people with disabilities and their families can identify with the people she writes about - those who have been ignored and marginalized by the mainstream of American society. 

Complaining to expose problems and bring about change is a good and noble pursuit, but the question of how to complain effectively to resolve problems for the benefit and satisfaction of a disabled individual is more complicated. Much of it will depend on your situation. All too often we allow others to complain for us. Professional advocates may be eager to step into that role, but sometimes they may have their own agenda that conflicts with the needs of the person with a disability. Sometimes advocates claim to represent us without even asking if we want their representation. Others with fancy titles and advanced degrees may be brought in to bolster our arguments, as if our own accounts of what we experience are not worthy to be heard without the validation of experts. This is not to say that specific expertise and people experienced in the workings of the systems we have to deal with are not helpful. They usually are. But at the core of any good complaint is the experience of the person who has been wronged.

Complaints that involve violations of an individual's right to be free of abuse, neglect, and exploitation can come from almost anyone and deserve immediate investigation. They are most effective when the person is filing the complaint on his or her own behalf or, when that is not possible, from someone who is knowledgeable about the individual and cares enough to follow through to see that the problem is resolved.

Points to consider when you join the ranks of the complainers:

Talk is cheap. Document in writing the basis for your complaint and your attempts to resolve the issue. Keep a notebook with you where you can write down conversations about the complaint and the responses you have received. Rather than complaining that no one ever listens to you, write down the information that you want them to hear and ask that it become part of the written record of the agency you are dealing with. It is hard to ignore written documentation.

Find out what the law says about your complaint. Look for references to the parts of law and regulations that apply specifically to your situation rather than rely on summaries. This is not as hard as it sounds once you learn that written information is available that gives you a more complete idea of the issues you are grappling with. Seek out people who can help you find what you need to know, but beware of people who wish to take over from you because they question whether your judgement is as good as theirs, even when they know next to nothing about you or your family member with a disability.

Get copies of records from the agency you are dealing with. Legal guardians, parents of minors, and the person with a disability have a right to copies of records kept by public agencies with few exceptions. Permission to see confidential records from the individual is necessary if you are not the person's legal guardian. The records will reveal information that decisions are based on. You then have the opportunity to determine whether the written records are accurate and complete. You may also find invasions of privacy with information that is irrelevant to determining the needs of the person with a disability. I remember from the old days of special education when parents could finally get their hands on school records and found out there were gossipy comments on their appearance, estimations of how wealthy or poor they were, whether they were good housekeepers, speculation on how a recent divorce was affecting their child, and other gossip unrelated to the school’s responsibility to provide an appropriate education to the child.

Get organized so that you can handle your complaint efficiently and find the information you need to determine what your next step will be in the process of resolving your complaint.

Don't Give Up! You may not get what you want immediately and you may feel like there are too many barriers to resolving a problem considering the time and effort you are putting into it. But in the meantime, you are way ahead in figuring out what makes the system of services for people with disabilities tick and what you need from it. These efforts are never wasted.

Going further with a lot of unsolicited advice is not helpful at this point. Investigating complaint, grievance, and fair hearing procedures that apply to your particular situation may be your next best step.


Once you have established a justified and righteous complaint, you are much better prepared to go out and work with other families, people with disabilities, and organizations to improve and change policies to help others in your situation without causing harm to people whose needs may be different from your own. JRB 6/23/19