Michigan: The Burden of Funding Crises should not be borne by People with Disabilities

Some Michigan Community Mental Health Agencies and administrative regional entities called PIHPs (Prepaid Inpatient Health Plans) are facing diminishing revenues in combination with demands for more services that they are required to provide. Washtenaw County appears to be having difficulties similar to those in Western Michigan, though not as extreme (yet). 

When the response to these fiscal crises is to reduce services to people the agencies are obligated to serve, families and their disabled family members need a refresher course on their rights while demanding that local and state agencies sort out how these shortfalls in funding will be resolved. 

This is a note from DD Advocates of Western Michigan with some good advice on what to do when service reductions are contemplated:

“Note that a Medicaid recipient is entitled to services ‘appropriate to their needs’, not subject to available (or reduced) budgeting. It is the CMH's responsibility to provide all of those appropriate services. It is the state's responsibility to provide adequate funding. The Regional Entity [the PIHP] is the intermediary in this process, possessing the contract for providing eligible Medicaid services through it's provider network and CMH agencies. If the Region does not have adequate funding, then it must press the state to allocate more funds for these needed (required) services. Oversight of individual CMH agency funding and the region's budget is a critical component of its mandate. … Encourage the prohibition of ‘rationing’ in any shape or form. ‘Utilization management’ can just be a buzzword for rationing, and is what the medical insurance business uses to limit their financial exposure. The more they restrict or make difficult to access, the better their bottom line. If a service is appropriate and needed, is Medicaid allowable and requested via the PCP [Person Centered Plan], then insist on its delivery, or challenge any such failure to provide it via the Medicaid Fair Hearing process. Demand what is your entitlement. It's their job to figure out how the provide it.” [emphasis added]

Washtenaw County Community Mental Health Board

Having been to many Community Mental Health meetings over the years, I can say that some are more entertaining than others depending on the range and relevance of topics covered. Anyone wanting to understand how this part of local government works can find out more by attending the CMH Board meetings and following their activities.

Your local Community Mental Health Agency funds programs and services for people with developmental and other disabilities. Administrative decisions are ultimately the responsibility of the CMH Board of Directors.  The Washtenaw County Community Mental Health (WCCMH) Board meets on the 3rd Friday of every month. Board materials are available before each meeting and minutes are posted after they have been approved: 

WCCMH Board meetings 

9:30 a.m. on the 3rd Friday of every month 

Washtenaw County LRC 

4135 Washtenaw Avenue

Ann Arbor, MI 48108 

Materials for Board meetings, past and present, are available at the Agenda Center on  the Washtenaw County Website. 

When you download the agenda, it has all the items for that meeting included in one packet of materials.

Here is the Calendar of Washtenaw County Boards and Committee Meetings.

WCCMH Board members

The Disastrous Privatization of Medicaid in Iowa

See more on Iowa's managed care disaster here.

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.

9/11 seventeen years later - still "The Bravest"

Solutions for Special Needs Housing

Below is an article from the Autism Housing Network that was originally written for the Special Needs Alliance in 2016. It is full of interesting links and information for families to come up with housing solutions for their disabled family members.

"I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions." ....Desiree Kameka

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Housing: A Big Piece of Puzzle for Ensuring Your Loved One’s Future

Article by: Desiree Kameka

Written on: Aug 27, 2018

This article was previously written for the Special Needs Alliance, posted here, and has been reposted on the Autism Housing Network.

As the project leader for the Autism Housing Network, I have visited over 100 residential options and social enterprises across our country. I have seen the great, the good, the bad, and the “I thought this was a good idea.” Abraham Maslow was right when he listed “shelter” as one of the foundational elements for his Hierarchy of Human Needs and Dimensions, along with air, water, food, sleep (another big one!) and clothing. A home determines physical and mental health, access to opportunities and quality of life for an individual. Housing is the anchor for a stable life.

When thinking about the future of your loved one with intellectual/developmental disabilities, you probably ask yourself if you should be focusing on finding the right service provider, building relationships, seeking employment, etc. We can invest enormous amounts of energy in pursuit of those important goals. But all that may be lost if rising rents force someone on an extremely low, fixed income, or their host family, to relocate. Or if the group home they live in must close. The greatest investment we make to ensure life stability is a home. Even when all other plans fail, loved ones still have their home.

To help families plan and understand their choices, Madison House Autism Foundation created a five-part video series called the AHN Virtual Tour of Housing and Support Options, which describes the benefits and considerations of 18 different housing and service delivery options, from traditional to emerging models. The video series will explain examples in depth, but there are four major categories to consider for legal and financial planning: 

Rely 100 percent on government support. 

Options include:

• An Intermediate Care Facility (ICF-ID), through which housing and support services are provided to eligible persons needing an institutional level of support; 
• Placing in a host family home, adult foster care or group home, with rent paid to the service provider using Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), and support services paid for through a Medicaid waiver; 
• Securing an affordable housing voucher/unit, with a Medicaid waiver paying for support services in one’s home. 

The availability of these options is extremely limited and can fluctuate, depending on government policy and budgets. This is where members of the Special Needs Alliance can be of great help, since public assistance is often “means-tested,” and it is important to be vigilant to ensure that one remains eligible. The AHN Resource Directory has a filter for ‘Finding Public Assistance’ that can lead you to helpful links.

Invest privately in housing and access Medicaid for support services and/or arrange supportive housemates. 

This disconnects one’s service provider from their housing and provides the most control over one’s home. One could continue living in their family home, or could move into a tiny home/accessory dwelling on the same property, or another home purchased for them elsewhere. Some families combine resources in order to buy a home together. Others may purchase a home/unit in an intentionally neurodiverse cohousing or planned community. A Medicaid waiver would then be needed to pay for everyday assistance and support. Under these circumstances, one can change service providers as needed without being forced to relocate. This separation of housing and service provider is generally referred to as “consumer-controlled” housing. Renting to roommates can offer an additional income stream to help pay for living expenses, as well as offering unpaid support. 

100% private pay, tuition-based residential. 

This can be a single apartment in a big city or a campus-based setting, where one has home, work and recreational options. Tuition includes one’s housing, coordination of daily in-person support, meals, planned activities, transportation and other services. This is an option only if you can afford tuition that starts at $38,000 a year for the individual’s lifespan. It is important to think about whether or not the provider will be around for the duration of your loved one’s life or what would happen if their support needs change. You can find a list of these in the AHN Housing Directory by clicking “Private Pay” under the “Payment Options” filter.

Transitional or post-secondary programs. 

This is not a permanent solution. Instead, it’s a private pay program that intensely teaches life skills, with the goal of giving someone the training needed to live more independently in the future. It is an investment of at least $2,500 a month for the duration of the program. These can also be found in the AHN Housing Directory.

I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions.

I hope this has been a helpful introduction and has persuaded you to prioritize housing when planning for the future.

"Nothing About Us Without Us": An empty slogan for residents of facilities for intellectually disabled

Unfortunately, this is typical of how residents of Intermediate Care Facilities for people with intellectual disabilities (ICF/IID) and their families are treated in discussions about closing these facilities. This is from the VOR email news update of 8/10/18:



The Press and Us

A small online news service in Connecticut ran a series of articles this week, ostensibly about how the state's financial problems affect non-profits that offer a variety of services to people in the CT, and how they need more support from the public, religious groups, and the State. While the 10-article series covered a number of non-profits, the focus of the reporting was limited to one topic.

What this series really amounted to was this year's forum for the opponents of Southbury Training School [a state run ICF/IID]. Last year, they funneled $50,000 through the CT Council on Disabilities and the ARC of CT to pay for a program on Connecticut Public Television wherein they made their claims that everyone does better in the community and that closing all ICFs will magically provide services for people on the waiting list. All of this is opinion dressed up as news, and none of the people involved in this story have ever bothered to visit Southbury Training School or any of the three remaining Regional Centers.

We've heard this all before. We know different. We've seen tens of thousands of beds disappear from ICFs over the last three decades while waiting lists have grown at an even greater rate. We have seen the differences between what is offered at ICFs and at HCBS [Home and Community-Based Services] waiver settings. We know that one size does not fit all and that the needs of the higher functioning members of the IDD population have little in common with the needs of the most severely intellectually disabled.

We are not going to link to these stories this week. Our members have read this before, and we don't want this news outlet to get any more "hits" than they already have. Instead, what we are going to do is remind our readers of how important our contacts with the press are, how much power the press has, and the need to find reporters who are interested in all sides and nuances of the stories they write, and to work with those reporters. It's not a matter of fake news - it's about good, responsible reporting...