This is a last minute notice that came to me by way of Intentional Communities of Washtenaw.
************************* ADVOCACY ALERT Town Hall for Education & Advocacy Monday, February 29th.
This is an urgent message for all of us concerned about persons with developmental disabilities including residents of Intentional Communities. Please read it carefully and take action to oppose the changes that are being proposed including attending the town hall meeting on Monday.
There are some fairly terrifying aspects of the proposed 2017 Michigan budget, specifically Section 298 - which eliminates Prepaid Inpatient Health Plans (PIHP's) in our state and puts the money into the HMO's [Medicaid Health Plans].
Michigan is the only state that is completely managed care and has integrated care for persons with mental illness, intellectual/developmental disabilities, and substance use disorder services into one system. According to a 2015 Public Sector Consultants report Michigan is pioneering advances in care that is innovative, cost-effective and evidence-based.
However, despite Michigan's many successes in behavioral health care, the FY17 executive budget recommendation includes section 298 of the Michigan Department of Health and Human Services Budget - a proposed change without any initial research or analysis that would transfer management responsibilities of all Medicaid behavioral health dollars ($3 billion) from the current publicly managed PIHP system to the privately managed Medicaid health plans by the end of FY17. This change would significantly harm an already underfunded system of care for Michigan's most vulnerable citizens.
Washtenaw County Community Mental Health wants to educate our consumers, families, and stakeholders on the proposed changes of Boilerplate 298 and provide materials to help flood our legislator's inboxes and mailboxes with statements and stories on the importance of Mental Health Services.
Please help spread the word about this town hall. When: February 29, 2016 at 5:30pm Where: St. Luke Church-4205 Washtenaw Ave., Ann Arbor, MI
Questions? Contact Community Mental Health. Call 734.544.3050 or email customer_service@ewashtenaw.org
Lisa Parles Speaking at the 2015 EASI Foundation and Families CCAN Conference
Lisa Parles, is a New Jersey attorney and the parent of a young man with severe autism. On October 15, 2015, speaking at a housing conference in Philadelphia, she gave an eloquent talk in defense of campus settings for people with intellectual and developmental disabilities. Her son Andrew lives in the Bancroft Lakeside community in Gloucester County, New Jersey. Lisa Parles’ son went through a regression at the age of 19, something that is not uncommon among teenagers with severe autism and other developmental disabilities. At the time, he lost his ability to speak, had severe self injurious behaviors, and did not sleep for days on end. There are many people like Andrew that most people do not like to talk about, but Parles believes parents need to speak up about their children so that services necessary to help them will be available.
She believes that the campus setting with a full array of services on campus is a clinically superior model for a vast number of individuals affected with developmental disabilities. It provides economy of scale (more resources concentrated in one place serving more people at less cost per person), more flexibility for the individual and staff, on-campus resources for people who cannot leave the area without being harmed or causing harm to others, behavioral and nursing services available when needed, and a greater sense of family and community than is found in many smaller settings.
More from Lisa Parles:
The federal Home and Community-Based Services (HCBS) rule assumes measures of “success” that can actually be harmful for some people with severe DD: having access to food whenever one wants, being able to choose a roommate, having the freedom to come and go as one pleases, living at home vs. living in a group setting, to name a few. Parles responds by saying, “[for] some people.. access to the refrigerator is eating until they die. A key to the house means elopement and [being] hit by something in the street. choosing a roommate is not an option because for my son he can’t have a roommate. When my son doesn’t sleep for two days, he almost can’t have a housemate.”
On the relatively high cost of maintaining someone in a congregate setting compared to another person living at home with one's family, she says, not only is living at home not possible for many with the most severe disabilities, but “Sometimes what it costs is what someone needs. So to say we can do twenty people in a home situation for the price of one in my view its the equivalent of saying we can give out a thousand bandaids or one surgery. When you need the surgery, the number of bandaids don’t count.”
On redefining “success”: “The direction we’re going…who’s getting to define what a community is, who’s getting to define what success is? They’re on the wrong path.”
From: Ann Arbor Commission on Disability Issues [mailto:a2disabilityissues@gmail.com] Sent: Wednesday, February 10, 2016 5:14 PM
Hello,
The Ann Arbor Commission on Disability Issues is looking for new members.This Commission is an advisory board to which members are nominated by the Mayor of Ann Arbor and approved by City Council. We promote equal opportunities and look for ways to create full participation in all aspects of community life for people with disabilities. We are currently looking for new community members to join our commission.
Commissioner activities include identifying barriers to access in our community and working with the City Administration to make corrective changes, engaging with other community groups to raise the profile of our commission, and advocating in general for an inclusive and accessible Ann Arbor.
In addition to people who have a disability, others who are encouraged to apply include caregivers, parents, and individuals who live with someone who is disabled. Anyone who wants to advocate for change and fairness is welcome.
I am writing to ask your help by printing the attached flier and hanging it within your business or posting it to your website resource page or within your newsletters. Also, please feel free to forward both this letter and the flier to others who advocate for people with disabilities.
We appreciate your time to consider these materials. For questions you can call me at 734-996-5569 or e-mail me at a2disabilityissues@gmail.com.
Sincerely, Sally Hart Petersen Chairperson Ann Arbor Commission on Disability Issues *************************************** Ann Arbor Disability Resources
Application for City of Ann Arbor Boards, Commissions, and Committees
Flyer on the AA Commission on Disability Issues The Commission on Disability Issues meetings are held at 3:15 p.m. on
the third Wednesday of each month in the Larcom City Hall building,
Council Chambers Second Floor, 301 E. Huron St.
From the Madison House Autism Foundation (MHAF). Follow this link to watch the video and see photographs of this amazing community:
By Desiree Kameka In 2013, in the middle of a New Jersey suburb, a small apartment building was built to offer a supportive housing options to about 40 residents with intellectual/developmental disabilities (I/DD). Those who live there choose from either a one bedroom or two bedroom unit each with a living room, spacious bathroom, a small kitchenette, cable, internet, and telephone. There is no set schedule for any resident; some residents have jobs in the community, others volunteer with local charities or are working with vocational rehab to access employment opportunities. Residents live the life they want to live and go about their day with self-directed supports as needed. As a resident of Mt. Bethel Village, one has the option to attend a day program in the community that can act as a stable support system or a safety net when job or volunteer options cannot fill one’s day. Mt. Bethel Village also includes an art studio, a gym, a library, a pool/ping pong tables, a dining area, and a community room with flat screen TVs and gaming consoles. Other amenities include transportation, an on-site nurse for medical management and referrals, housekeeping and/or laundry services, meal plans as desired, a receptionist, and 24-7 support staff as needed. When I visited Mt. Bethel Village, I had the opportunity to ask many residents why they liked living there. Most said things along the lines of, “I can be independent,” and “I have lots of friends.” Watch the video below to hear what residents think about their choice to move to Mt. Bethel Village. Mt. Bethel Village is currently home to about 30 residents with I/DD. All of them have complete financial support of their family and can privately pay for their supportive housing apartment at a cost of at least $4,200 a month. One of the founders of Mt. Bethel Village used to be a direct support professional at a skilled nursing facility, having seen the dehumanization of people and their struggle to become completely dependant on others, he knew a better way of supportive living was possible. Herb eventually became the President and CEO of a senior assisted living community company.
Mt. Bethel Village could be for only those who could private pay, but Herb would not allow that to happen. In the spirit of equity, and having a long list of hopeful individuals that could not move to Mt. Bethel Village without state support, they have fought to become an approved agency with the NJ Dept. of Human Services’ Division of Developmental Disabilities, their state Medicaid authority. At the time of my visit in October 2015, the nine individuals who had been identified as a good fit had been waiting for over 10 months for the green light to move in, three of them are still waiting. While the majority of Mt. Bethel Village residents live in their own one or two bedroom apartment, those who access public funding must live in a three bedroom units. In order for these residents to move in, Mt. Bethel Village used their own funding to remove the walls from existing one and two bedroom units to accommodate the state mandate that three persons must live in an apartment. Considering over 26,000 individuals with I/DD in NJ are living with a family caregiver over the age of 60, and funding for an out-of home placement has only grown by about 3,000 in almost two decades, New Jersey should be doing everything in its power to ensure they will have the housing and supports needed for those who may soon lose their parents and be forcefully institutionalized for lack of options.
Mt. Bethel Village does not operate nor look like a typical apartment building, but more of a college dormitory or assisted living community with much more interaction among neighbors than a typical apartment complex. I can see how this can be confusing for the state to try and put it in an already preconceived settings checkbox, but just because it does not fit any of the current models of housing and may offer different kinds of amenities and built-in supports does not mean it’s institutional. For example, despite having private kitchens in every unit and the transportation with supports to go grocery shopping, most residents rarely decide to cook and prefer to have their meals in communal dining areas. Mt. Bethel Village has two chefs who offer several meal selections, oftentimes featuring at least one person’s favorite meal (the chefs know and request favorite dishes from residents). I had a delicious chicken tortilla soup with shrimp scampi during my visit. On the weekends, while some choose to go out to eat or visit family, others prefer to enjoy the family style dinner at Mt. Bethel. Having a common dining area has been described as a characteristic of an institutional setting by state and federal policymakers, but that seems unfair if residents have the choice and prefer not to plan, prepare, and eat in their apartment. Having a meal plan is a viable option and may improve quality of life for those whom going to the grocery store and planning meals is a stressful event. It offers a social outlet for those who would prefer not to eat alone in their apartment and offers a healthy alternative to the typical microwave dinners that many who don’t like or want to cook use for convenience.
Living in an intentional community provides the space to create a culture of access and neurodiverse leadership. Residents at Mt. Bethel Village have weekly opportunities to sit with the Executive Director, Carolann Garafola, to discuss community concerns and jointly plan solutions. Another fun culture-building initiative came from residents starting to host “Open House” events in their apartment where they create invitations, plan activities around a theme, prepare food and refreshments for their party guests, and of course, clean up after the party is over. Mt. Bethel Village offers a 2 week respite session that would give you the chance to really understand the benefits and considerations of living in an apartment building built specifically to meet the housing and support needs of peers with intellectual / developmental disabilities. Living in such a close-knit and socially stimulating environment may be too much for those who are not social butterflies, but of course one can always retreat into their own apartment as needed. Despite many residents telling me that their move occurred because their parents were sick or had passed away, my conversations with so many residents were full of joy, excitement, and pride in their home and life at Mt. Bethel Village.
All in all, to describe Mt. Bethel Village as institutional, a congregate facility, or isolating just because 40 individuals with I/DD live there is not only inaccurate but a gross disregard for their preferred home choice. When asked what he would change about living at Mt. Bethel Village, the young man in the video did not say, “We need more time in the greater community” or “more neurotypicals to be a better integrated setting.” He declared with enthusiasm that he wanted more friends to move into Mt. Bethel Village! Recently, someone asked, “Do you support congregate settings?” My response was, “I support as many options as possible for people with disabilities to have choices, therefore it does not matter whether or not I agree with their choice or not – they have the right and dignity to choose.” Our discussion went back and forth and eventually culminated with him adamantly urging that people with disabilities do not want to live together. I have traveled all over the USA and seen countless examples of people with disabilities choosing and happily living inintentional communitiesamong peers. Many of the individuals I’ve met lived on their own and were unsatisfied or even victims of abusive situations. I assumed he was simply unaware of the supportive housing communities I have visited. I asked if he would like to be introduced to self-advocates who have chosen to live as neighbors in intentional communities, and he refused to even give me his contact information to make introductions. His resistance has inspired me to start sharing interviews of residents living in an array of housing options all across the country. Stay tuned for more of these incredible stories!
This is the definition of Supported Employment services as defined in the federal Developmental Disabilities Act:
The term 'supported employment services' means services that enable individuals with developmental disabilities to perform competitive work in integrated work settings, in the case of individuals with developmental disabilities
• for whom competitive employment has not traditionally occurred; or • for whom competitive employment has been interrupted or intermittent as a result of significant disabilities; and • who, because of the nature and severity of their disabilities, need intensive supported employment services or extended services in order to perform such work.
Supported employment is funded by a variety of sources that have their own eligibility criteria, including Vocational Rehabilitation. People with developmental disabilities are more likely to have funding through Medicaid Waivers that provide ongoing rather than temporary support for employment. ********************************** There is growing momentum to move people with disabilities from sheltered workshops (facility-based work programs) into integrated work settings. In these regular work settings, people with disabilities work beside their non-disabled peers, making minimum wage or better depending on the job. Proponents of supported employment contend that as long as appropriate supports are available and the person with a disability is in the right job, the goal of “real” employment should be achievable by everyone with a disability who wants to work.
My experience with having two sons with profound physical and intellectual disabilities makes me skeptical of the idea that “real” employment is possible for all. I am not convinced that employment in competitive, integrated settings is a matter of choice unrelated to the severity or nature of the individual’s disability. For many people with severe disabilities who enjoy working and receiving a paycheck, whether or not they understand the value of money or the idea of work in any abstract way, a job in a group setting with other people with disabilities may be more satisfying and fulfilling than a job in a competitive work environment. For others like my sons, there are activities other than employment for pay that are more appropriate and that bring real pleasure and benefit to their lives.
One of the arguments made by advocates of supported employment is that it is cost effective, meaning that the costs of funding the supports necessary for people with developmental and other disabilities to work in competitive, integrated employment is more than offset by the economic benefits that accrue to disabled employees and taxpayers.
In the 1990’s there were similar efforts to promote supported employment for people with even the most severe physical and cognitive disabilities in integrated work settings. Then, as now, there was money to promote the idea and advocacy groups encouraged people with disabilities and their families to consider supported employment. I remember attending a meeting of parents at my sons’ school with the director of our local advocacy organization who believed that everyone could work and be successful in integrated settings. In all earnestness, he said “Anyone who can move at least one muscle group can work at a paying job.” My first thought was, what if the person moving “at least one muscle group” was not aware that what he or she was doing was considered “work” by someone else?
On other occasions, where advocates promoted supported employment, we watched videos and listened to heartwarming stories of people who were set up with all kinds of devices and help that allowed them to perform work. If they had cognitive disabilities that slowed them down or made the work more difficult, they had job coaches to help them complete tasks and make sure that the job got done in a satisfactory manner.
Eventually, it seems the effort to place people with significant disabilities in jobs lost momentum because of the expense of providing the necessary supports and perhaps by a loss of interest in a project with unrealistic expectations for many people with such severe disabilities.
Employment First!
The current push to employ people with disabilities, generally called “Employment First!”, calls for sweeping reforms in how and where people with significant disabilities are employed. These reforms are supposedly supported by studies and other evidence that show we have been wasting our time and resources on programs like sheltered workshops that don’t result in “real” jobs at competitive wages. Based on my long memory and the practical implications of closing programs that many people with disabilities and their families need and want, I have reservations about the future success of Employment First!, including whether it will prove to be cost effective. Among several papers that I read on supported employment, one was a literature review that appeared to be the mostcomprehensive, in that it looked at a variety of studies of employment programs for different populations of people with disabilities over a period of more than a decade.
The paper is called, “The economics of supported employment: What new data tell us” by Robert Evert Cimera at Kent State University. It was published in the Journal of Vocational Rehabilitation in 2012. The abstract seems to provide evidence that supported employment is cost-effective and beneficial to employees and taxpayers:
"Abstract. This paper reviews the literature on the economics of supported employment. By comparing results from research conducted prior to, and after, 2000, several important findings were identified. The first was that individuals with disabilities fare better financially from working in the community than in sheltered workshops, regardless of their disability. This is especially true given that the relative wages earned by supported employees have increased 31.2% since the 1980s while the wages earned by sheltered employees have decreased 40.6% during the same period. Further, supported employment appears to be more cost-effective than sheltered workshops over the entire 'employment cycle' and returns a net benefit to taxpayers." Cimera is a proponent of supported employment, but like any reputable academic researcher and author, he includes both negative and positive findings in his work. His conclusions are tempered by caveats that need to be considered along with the apparently good news about supported employment.
Anyone who reads this paper will find numerous references and much to think about. I am going directly to the caveats that the author has placed like land minds in his paper, because I don't want you to miss them. They really are the most important feature of this work. The future of employment programs for people with needs as diverse as those with developmental disabilities is too important to leave out stipulations that tend to deflate some of the overblown rhetoric of advocates promoting supported employment.
The conclusion that I draw from the work of this author is that a one-size-fits-all approach does not work for people who need a full range of employment options and other programs to assure that they get what they need.
These are the issues that the paper addresses:
(page 111) Do “real” jobs provide a livable wage for people with disabilities?
“Although, research has consistently shown that supported employment produces more monetary benefits than costs, there is an important caveat to this finding.
“While the wages earned by supported employees rose continuously over the years and are significantly higher than what can be expected in sheltered workshops, supported employees are still making wages that will not keep them out of poverty…more needs to be done to develop positions in the community for supported employees that pay a livable wage.”
(pages 114 – 115) Are supported employees cost efficient regardless of disability and the presence of secondary disabilities?
“…supported employees, in general, appear to be cost efficient regardless of their disability and the presence of secondary disabilities. Nonetheless, there are three important caveats to these findings.
“The first is that supported employment is only cost efficient in relation to sheltered workshops. That is, if the savings from not funding sheltered workshops were taken out of the equation, every study reviewed here would have found that supported employment had greater costs than benefits to the taxpayer. Therefore, if the cost-efficiency of sheltered workshops improved or sheltered workshops were no longer an alternative program, the cost-efficiency of supported employment would decrease.
“The second caveat is that research has found that certain populations of supported employees may not be cost-efficient in some states. …This raises the question of why. What makes some state and localities more cost-efficient at providing supported employment services than others? It also raises the question, “Are there other disabilities (e.g., ASD [Autism Spectrum Disorder] or TBI [Traumatic Brain Injuries]) that are not cost-efficient to taxpayers in some states?” Future research will need to address both of theseissues.
“Finally, supported employment is only cost-efficient from the taxpayers’ and worker’s perspectives if supported employees become employed in the community. Unfortunately, rates of employment among people with disabilities remain low. Only 33.5% of individuals seeking services from vocational rehabilitation become employed by the time their cases are officially closed... Quite simply, this figure has to be increased. The more people with disabilities who become gainfully employed within their communities, the greater the benefits to them and the taxpayer.
“…Moreover, the comparisons between sheltered and supported employment are based upon the populations of individuals presently being served by both programs. It may be that there are individuals with certain disabilities, or combination of disabilities, who are served primarily by sheltered workshops and not supported employment. In other words, perhaps there is a “creaming effect” where the most competent workers go into supported employment while those with more limited skills and challenging behaviors enter sheltered workshops. Additional research needs to determine if there are populations who are served more cost-effectively in segregated programs.”
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In other words, supported employment programs are economically cost-effective except when they aren’t.
Late week, State Representative Frank Liberati (D-Allen Park) and state Senator Rick Jones (R-Grand Ledge) announced the formation of the Disabilities Awareness Caucus, a bipartisan, bicameral effort that will focus its attention on policy issues facing those with a disability.
“I serve as a board member of the Special Olympics Michigan. Many concerns of special needs children and adults have been brought to my attention over the years, and I hope to work on some of these concerns with this caucus,” said Jones, a co-chairman of the caucus.
“We have brought together a great group of legislators who will bring disability issues to the forefront of policy discussions in Lansing,” said Liberati, who will also serve as co-chairman of the legislative caucus. “It is time we put words into action.”
Other members of the caucus include; Senators Curtis Hertel Jr. (D – Lansing) and Margaret O’Brien (R – Portage), and Representatives Hank Vaupel (R – Fowlerville) and Christine Greig (D – Farmington Hills).
On Thursday, MACMHB staff met with Representative Liberati to discuss MACMHB’s interest and potential partnership with the caucus. Rep. Liberati has a tremendous amount of passion around these issues as he is a parent and advocate of a 19 year old son with an intellectual/developmental disability.
************************************** I do not have email addresses for these legislators, but here are websites for the Michigan House of Representatives and the Michigan Senate . As you might imagine, legislators can be swamped with emails, especially when big issues are being decided. They are always willing to hear from constituents in their own districts, but it may be difficult to get through if you are not in the legislator's district. A phone call to a legislator's office might help you to find an email address for a legislative aide who is willing to pass on messages from you or to put you in touch with people dealing with a specific issue.
Go forth and exercise you democratic perogatives. Big budget battles are coming.
Supported Decision Making or SDM is a national intiative to reform or replace court appointed guardianship. It is described here as "a process in which adults who need assistance with decision-making... receive the help they need and want to understand the situations and choices they face, so they can make life decisions for themselves, without the need for undue or overbroad guardianship".
The following are comments I made to the National Council on Disability (NCD) during a panel discussion on guardianship and Supported Decision Making on 2/11/16.
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My name is Jill Barker and I am from Ann Arbor, Michigan. I have two adult sons who have profound physical and intellectual disabilities. Danny is 39 years old and Ian is 31 years old. They both function at about the level of a six-month old infant, and are totally dependent on other people for their care and well being. My husband and I are their plenary co-guardians which gives us the tools we need to assure that their rights are protected, that they receive the services they need, and that they are treated with dignity and respect. We monitor their care, participate in decisions affecting them, and intervene when their interests are being neglected or ignored.
I have read a great deal about Supported Decision Making. The core belief espoused by its advocates is that all people with developmental and intellectual disabilities must be presumed to be capable of making decisions for themselves. What is rarely acknowledged is that there must also be a mechanism to overcome this presumption when there is evidence that a person is unable to make or communicate decisions in some or all aspects of their lives. This lack of capacity is likely to put the person at substantial risk of neglect, abuse, or exploitation. Guardianship is designed to be that mechanism.
I would also add that people with severe or profound disabilities who lack the capacity to make decisions and do not have a guardian or other legal representative to protect them, are likely to be at the mercy of public agencies that are strapped for cash and are focused on reducing the cost and number of services they provide to people with DD.
Many advocates for SDM state explicitly that their goal is to eliminate guardianship. Others state that this is not what they are trying to do, but their words and actions show that they intend to make guardianship as difficult to obtain as possible. Advocacy organizations espousing SDM are also poised to obtain funding from federal agencies to promote Supported Decision Making and as such are in a poor position to claim that their only interests are the rights of people with disabilities.
In Virginia and Missouri, there have been recommendations to make Supported Decision Making a part of their guardianship laws and to make it mandatory for a guardian to espouse the belief that their family member is capable of making decisions, even when a court of law has determined otherwise. This is an outrageous imposition on people with disabilities and their families.
If Supported Decision Making training is found to be valuable by individuals and families, then, by all means, they should have access to it, but this should be strictly voluntary. When an individual or guardian is involved in a supported decision making process, it should be made clear from the outset that all decisions are ultimately up to the individual and family, or a court-appointed guardian, when there is one. In any federally-funded program there should also be protections in place to protect the privacy of the individual, prevent coercion from having choices imposed on the individual, and to prevent unwanted intrusion into their personal lives.
Washington State Residential Habilitation Centers are part of the full range of services necessary to serve people with developmental disabilities. RHCs are Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) that are funded and regulated by The Centers for Medicare and Medicaid Services. They arefacilities that provide services to people with the most intense medical and behavioral needs.
ICFs/IID have other names depending on the state such as Human Development Centers, Developmental Centers, Training Centers, etc. Unfortunately, these centers are closing all over the countrybecause of a deliberate misinterpretation of the 1999 Supreme Court Olmstead decision,by a misguided desire by states and the federal government to save money, and by the zealotry of federally-funded disability rights organizations that oppose institutions on principle without consideration of the individual needs and circumstances of people served by ICFs/IID.
Instead of expanding the use of these centers to meet the needs of their surrounding communities, the 2014 HCBS (Home and Community-Based Settings) rule makes it almost impossible for the greater community to access the resources of ICFs. The HCBS rule disallows funding for settings in the proximity of ICFs or for ICF services unless they meet strict "heightened scrutiny" criteria. This has the effect of marginalizing people who live in these facilities and their families and cutting off solutions to serving people with severe disabilities in the community that could alleviate their desperate need for services. Here is background information on ICFs/IID. Because We Care - Beyond Inclusion is a great source of information on RHCs in Washington State and commentary on the need for a full continuum of services and care for people with DD.
