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.

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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.

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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

Abelone Kelley June 24, 2019 0

Washtenaw County CMH Board hears from families and people with developmental disabilities, 6/21/19

On 6/20/19, Kerry Kafafian, a parent who is spearheading a project called “Home Grown Community” in Washtenaw County, sent out an email encouraging families to attend the Washtenaw Community Mental Health Board meeting on 6/21/19. Earlier, Kathy Homan from the Washtenaw Association for Community Advocacy had sent out an email reporting that a CMH Board member at two CMH committee meetings had suggested that CMH tell the state that the county would no longer provide Community Living Supports (CLS) or Applied Behavior Analysis (ABA) for people with autism in order to eliminate a $10 million deficit in the CMH budget.

The DD community is mentioned infrequently at CMH Board meetings and this seemed to be a good time to let the Board know about the importance of the services needed by people with DD and their families.

The Friday 6/21/19 Board meeting was attended by 25 to 30 (in my estimation) family members and people with disabilities who spoke to the Board during an extended period for public participation. It was an amazing turnout, considering that many of the families involved are under a great deal of stress. They cannot do something as simple as grocery shopping without making arrangements to have a responsible adult caregiver available to their disabled family member. The Board meetings are held from 9:30 to 11:30 a.m., an inconvenient time, especially for people who work, making it even more difficult for families to attend. There were many people who could not make it on Friday but who nevertheless wanted to address the Board.

Some parents spoke of their children being exposed to abuse and neglect in other settings outside of their own homes and many spoke of the difficulty in hiring Medicaid-funded support staff at poverty level wages. One parent told of how the CMH system has moved the chains and bars from institutions to his home, where he cannot find staff to take care of his son with extreme behavioral difficulties. Others were very happy with the services their loved ones were receiving and said that they were life sustaining for their families and liberating for their disabled family members. They did not want the services discontinued. Parents also expressed how sleepless nights and relentless caregiving responsibilities had pushed them to the brink of exhaustion and beyond. Another called the contemplation of removing services as reckless and irresponsible and another mentioned that there was no end in sight to caregiving responsibilities for people with lifelong disabilities. Another said that using our loved ones as pawns to get more money from the state was reprehensible. 

Board members expressed appreciation for all who attended; some described their own struggles with mental illness themselves or with their family members. In response to questions, the Board said they had joined a lawsuit against drug companies that have made huge profits on selling opioids. Washtenaw County is also involved in a lawsuit against the state for chronic underfunding of services that the local CMH is mandated by law to provide. The board member who had made the suggestion to cut services to force the state to pay for them apologized for his insensitive remarks. No decisions have been made yet on how to deal with the CMH budget deficit.

Attached is a calendar showing CMH Board and committee meetings for 2019. They all include a time for public participation. Anyone can submit a written statement to the Board at any time. I do not have specific information for sending written or electronic materials to the Board, but Customer Services at 734-544-3050 or 877-779-9707 should be able to give you that information. Their hours are from 8:30 a.m. to 5 p.m.

Jill Barker
Ann Arbor, MI

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This is a definition of Community Living Supports from the Michigan Medicaid Provider Manual, a huge document (never make the mistake of trying to print the whole thing). CLS is a service provided under various Medicaid Waivers and State Plan benefits for people with disabilities:

"Community Living Supports (CLS) facilitate an individual’s independence, productivity, and promote inclusion and participation. The supports can be provided in the beneficiary’s residence (licensed facility, family home, own home or apartment) and in community settings (including, but not limited to, libraries, city pools, camps, etc.), and may not supplant other waiver or state plan covered services (e.g., out-of-home nonvocational habilitation, Home Help Program, personal care in specialized residential, respite)."

2019 Calendar of CMH Board and Committee Meetings

WCCMH Board Members

Abelone Kelley June 24, 2019 0

Michigan: Medicaid eligibility is not the only way to qualify for services for people with DD and other disabilities

A letter of clarification from the Michigan Department of Health and Human Services, dated 12/14/2018, was sent to Executive Directors of Prepaid Inpatient Health Plans (PIHPs) and Community Mental Health Services Programs (CMHSPs) concerning misinformation about eligibility for mental health services, including services for people with intellectual and developmental disabilities. The letter is from Jeffery L. Wieferich, the Director of the Michigan Bureau of Community Based Services. [PIHPs are the regional administrative agencies that pass on Medicaid funding to local Community Mental Health agencies (the CMHSPs).] 

The body of the letter clarifies access and eligibility for Community Mental Health (CMH) services and corrects inaccurate information being provided to the public. Some CMH agencies and PIHPs have been misinforming the public that their agencies will serve only people eligible for Medicaid. This is not correct.

For one thing, many people do not apply for Medicaid until they are in need of services. There is some funding to serve people not eligible for Medicaid, and they are placed on a waiting list, if funds are not available. Services must be provided to all Medicaid eligible individuals. Everyone who contacts a CMH agency is entitled to an evaluation to determine his or her level of need. 

The letter makes these clarifications:

• Staff from a CMHSP may not state that the CMHSP only serves Medicaid beneficiaries. For those individuals that do not have Medicaid coverage, the Mental Health Code…is clear that a CMHSP must serve anyone in an emergent (crisis) situation…Following that, an assessment is required to be completed so that level of need is determined. If an individual’s level of need is not as severe as other individuals, then the CMHSP may determine that it does not have sufficient general funds to provide services and the individual is to be placed on a waiting list for CMHSP services (non-Medicaid only) and the CMHSP should maintain the list.
• CMHSP Access Center staff must screen anyone that calls for a crisis and then assure that applicants are offered appointments for assessments with mental health professionals of their choice within the…contract-required standard timeframes. For those individuals without Medicaid coverage, the Mental Health Code also states that a waiting list must be maintained for anyone that is determined not as severe as other individuals…
• When an individual with mental health needs [including people with intellectual and developmental disabilities] is denied community mental health services, for whatever reason, he/she is notified of the right under the [Mental Health Code] to request a second opinion and the local dispute resolution process…
• CMHSP websites should not be conveying only Medicaid eligible beneficiaries are served.
• When an individual has private insurance, this is not solely a reason to deny CMHSP services. The CMHSP is required to complete an assessment of the individual’s needs and then prioritize based on the [Mental Health Code]. The CMHSP shall not deny an eligible individual a service because of individual/family/income or third party payer source…

Another source of funding for children under the age of 18 is the Michigan Children's Waiver Program (CWP).

From the CWP Website: "To be eligible for the CWP, the child must have a documented developmental disability and need medical or behavioral supports and services at home. In addition, the child must have behavioral or medical and habilitative needs at home on a consistent daily basis that meet requirements for the level of care for an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID)."

The CWP waives the requirement that the family qualify for Medicaid and allows the child to be considered for services regardless of the family's income. There are a limited number of children's medicaid waivers, but it is worth getting on the needs-based waitlist.

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See the letter of clarification for references to the Michigan Mental Health Code.

See also Michigan Protection and Advocacy Service on eligibility for services.

Abelone Kelley March 14, 2019 0