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.
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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.
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.
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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
