Thursday, September 13, 2018

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.

Tuesday, August 28, 2018

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


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.

Wednesday, August 22, 2018

"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...

Sunday, August 12, 2018

Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many IDD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (IDD) together. Rather than emphasizing the individual right to appropriate services and the requirement 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], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them. 

To what extent is implementation of the Settings Rule improving the lives of people with IDD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with IDD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services. 

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else. 

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with IDD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases. [This is the same Sam Bagenstos who is running for the Michigan Supreme Court in the November 2018 election.] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.” 

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings. 

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.


See also, 

Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

VOR documentation of "Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2015 to Present" 

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

Monday, July 30, 2018

VOR reply to Congress on the meaning of Olmstead, July 2018

Mary Lazare is the Principal Deputy Administrator and Acting Commissioner on Disabilities at the federal Administration for Community Living (ACL). Remarks that she made at the Autism Society of America 2018 National Conference in July set off an uproar among some disability advocates who claimed that she said she favored segregating people with disabilities. 

According to an article in Disability Scoop, "Talk Of Segregating People With Disabilities Alarms Members Of Congress" by Michelle Diament, 7/18/2018, "The lawmakers said they were told that Lazare said she believed the Supreme Court came to the wrong conclusion in the landmark Olmstead v. L.C. case, which affirmed the right of people with disabilities to access community-based living, and that she prefers segregated and institutional settings." The problem is that there is no complete transcript of her remarks, no recording of her remarks, and conflicting third-hand reports from people who claimed to hear the remarks or at least heard of them from other people. Her subsequent Tweet of Apology and Regret is ambiguous, but she does say "We also recognize Olmstead gives people the right to other choices [than 'community living']". That part is exactly right.

Three members of Congress wrote to the ACL wanting to know more about Lazare's remarks, but also revealing a misunderstanding of Olmstead that is consistent with a misinterpretation that some advocacy groups have been promoting since 1999. VOR wrote to the three lawmakers "to emphasize the need for ICFs/IID in a full continuum of care and to clarify the true meaning of Olmstead for these lawmakers and their associates."


VOR Reply to Congressional Letter to the ACL

July 22, 2018

Representative Jan Schakowsky, 115th Congress, Illinois District 9
Representative Greg Harper, 115th Congress, Mississippi District 3
Representative Jim Langevin, 115th Congress, Rhode Island District 2

Lance Robertson, Administrator, Administration for Community Living
Mary Lazare, Principal Deputy Administrator, Administration for Community Living

Dear Representatives Schakowsky, Harper, and Langevin:

We are writing in response to your July 13th letter to Administrator Lance Robertson of the Administration for Community Living (ACL) regarding comments made by Principal Deputy Administrator Mary Lazare at the recent ASA [Autism Society of America] Conference. As there is no actual record of Ms. Lazare’s comments, we can only conclude that some of her statements deviated from the past positions expressed by the ACL, which have held that everyone does better in the community. Since the conference, accusations have flown around the internet, accusing the ACL of trying to re-institutionalize everyone and reverse the course of the last 30 years. We are concerned by the level of anger and hyperbole to which this issue has been raised.

Our concerns are legitimate, as our organization has been mischaracterized in many of these online diatribes. VOR is a national non-profit organization, founded in 1983 by families of individuals with intellectual disabilities (IDD). Many of our members have loved ones with severe/profound intellectual disabilities or behavioral problems. Many are non-verbal, non-ambulatory, have PICA or self-injurious behaviors, are subject to frequent seizures, or are medically fragile. Some families have loved ones with far less extreme disabilities, but feel that their needs are not being properly addressed by our health care system. VOR advocates for a full continuum of care, respecting the rights of all to the level of care that is most appropriate to their needs. We support the goal of community integration for those who desire inclusion, but we also support the need for high quality care, comfort and stability offered by Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) for those who have higher levels of need. We advocate for choice, and for supporting a full range of options to meet the diverse needs and goals of this population. Unlike other advocacy groups, VOR does not rely on government grants for funding. We are self-supported by membership dues and donations.

In response to the uproar about Ms. Lazare’s purported comments and your letter to the ACL, we are concerned that the 1999 Olmstead Decision continues to be misrepresented by advocates and by members of Congress. Olmstead is a well-balanced decision, supporting the ideal of providing access to the most integrated setting, but admitting that for some, the most integrated setting may be an “institution” (ICF/IID). The justices recognized the need to support ICFs/IID as part of a full continuum of services. The balance of Olmstead has been overlooked or ignored by many who quote only the passages about supporting what has become a mandate for integration-for-all.

Please read the accompanying document for further reference about the full meaning of Olmstead.

For years, our families have been told that their loved ones can receive the same level of support in HCBS waiver settings. We disagree. ICFs/IID are a vital component of our safety net. They are well regulated and must meet rigorous standards to qualify for certification from CMS. The current CMS State Operations Manual for ICFs/IID, Appendix J, contains 247 pages of requirements and protocols for treatment. There is no equivalent for HCBS waiver settings. While the level of service provided by ICFs/IID are not appropriate to most persons with IDD, they are vital to those with high levels of need.

In January, 2018 the HHS Office of the Inspector General, the ACL, and the HHS Office of Civil Rights issued a joint report addressing the under-reporting of critical incidents (abuse and neglect) of individuals with intellectual disabilities in HCBS waiver settings. This followed a November 21, 2016 series “Suffering in Secret” by the Chicago Tribunei and a 2011-2012 series “Abused and Used” in the NY Times. Just two days ago, the Auditor General of the State of Illinois issued a report on the performance of DHS oversight on the state’s CILA (group home) program, which found systemic failures in Illinois’ licensing and oversight of taxpayer-funded group homes for adults with disabilities. Even more distressing are the facts in the case of Georgia earlier this decade. A determination by the U. S. Department of Justice led the state to closing many of its ICFs/IID, without ensuring that the HCBS system was prepared to handle the medically fragile IDD population. The consequences were tragic. Over the years that ensued, many people died. A March, 2015 article in the Augusta Chronicle reported that 500 individuals died in group homes in the previous year.

Our purpose in this letter is not to point fingers or to say that one form of care is better than another. It is to say that the system as a whole needs to be re-evaluated, that we need to do better with the resources we have and build up every asset and resource we have. We need to stop diverting time, energy, and funds on ideologies and on committees and organizations that serve only a portion of our IDD population and devote our resources to direct care of individuals, sufficient wages for Direct Support Professionals, monitoring our system for abuse, neglect, and misuse of funds, moving people from the waiting list to appropriate services, and strengthening all of our existing forms of residential care, services, and employment opportunities.

The time has come to drop the dogmas that divide us and learn to support each other, to work to address the needs of all of our members and their families. Our waiting lists are too long. Too many of our people are underserved. Too many of our people are not receiving the right level of services and supports. Too much money is being wasted, spent on oversight agencies that fail to provide oversight or being diverted to lobbying groups that support their own self-interest instead of the interests of those they are tasked to serve.

Thank you,

Hugo Dwyer – Executive Director, VOR
Joanne St. Amand – President, VOR


See also,