The Ann Arbor Commission on Disability Issues is looking for new members

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

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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.

Supporting Families Part 1: Families of people with DD need help, but will they ever get the help they need?

I read reports, so you don't have to and this one is a doozy: "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities". 

The Supporting Families report came out of a conference held in March 2011 in Racine, Wisconsin.  The conference was sponsored by the federal Administration on Developmental Disabilities (ADD)  [now called the Administration on Intellectual and Developmental Disabilities (AIDD)]. Almost all the participants (see page 24 of the report) were professional advocates from programs and advocacy organizations funded, at least in part, by the federal Developmental Disabilities Act and administered by the ADD. Many of the participants are also identified as parents of children or adults with DD, but they  attended the conference as representatives of their programs or organizations.

Like many ideas coming from advocacy groups for people with developmental disabilities, the idea of Supporting Families is a good one. When one looks deeper, however, and considers the report's recommendations and how they might be applied in the real world, "Supporting Families" proves to be, at best, lacking in common sense and, at worst, potentially harmful to the people the participating advocates claim to want to help.

The Supporting Families report establishes that families do, indeed, need help:

(from Page 4) "Today there are more than 4.7 million citizens with intellectual and developmental disabilities in the United States. More than 75% of those living in their communities without formal disability services and relying on their families for varying levels of support. [emphasis added] Of the 25% receiving services, over 56% live with their families; in some states, the figure is as high as 80%. For many families, the support provided neither is short term nor does it end when the family member turns eighteen years old".

(from Page 5) "Families often are faced with emotional, social, physical and economic demands that they may not have experienced had their child not been diagnosed with a disability. 

• Twenty-eight percent of children with disabilities live below federal poverty levels as compared with 16% of children without disabilities.
• Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities.
• Over 58% of parents/caregivers spend more than 40 hours per week providing support for their loved one with I/DD beyond typical care. 40% spend more than 80 hours a week. [emphasis added]
• Long waiting lists for services and the increased lifespan of individuals withI/DD have contributed to a growing number of individuals with I/DD  households where the primary caregivers are themselves aging."

Several things bear repeating before going on: 75% of people with DD receive no "formal" (read paid) services. 58% of family caregivers spend more than 40 hours per week, the equivalent of a full time job, caring for their family member and 40% spend more than 80 hours, the equivalent of two full-time jobs, caring for their family member.

As a parent who cared for one or the other or both of my two sons with severe intellectual and developmental disabilities at home for 28 years, I know enough about the difficulties that families face to know that the report and its recommendations coming out of the conference on Supporting Families is not the report I would have written. There is useful information to be extracted from from the report, however, and it reveals a great deal about how policy becomes twisted to serve interests other than those of people with disabilities.

Given the set of facts about families presented in the report, it appears to me that the first step in easing the burden placed on families by an inadequate system of care and services would be to increase services available and appropriate to the individual with DD.  In addition, respite services that give families a break from care giving could be combined with expanded recreational and social activities for the DD family member giving the person with DD a much needed opportunity to have a life outside of the family home. Competent paid caregivers that come into the home to relieve families of constant care are also needed for both the family and the person with DD. These types of services go a long way toward keeping families together and reducing costs over the long term by delaying the need for residential placement outside the family home.

There are always situations where it is better for the welfare of the individual with DD and the family to have the option for the person with DD to reside outside the family home in a safe setting that provides services appropriate to the needs of the individual. We need to be especially cognizant, however, of people with DD who do not have families or whose aging parents no longer have the energy, ability, or will to care for another adult. We need to make sure that these individuals have the same rights and protections from harm that are are afforded people who are fortunate enough to have close and engaged family and friends who know and care what happens to them.  It is often the case that people with DD with close connections to family and friends have their rights upheld and respected because a devoted family member or friend fought for them.

It is likely that providing appropriate services to the person with DD and expanding direct services to families such as respite care combined other activities for the person with DD may require an increase in funding from federal and state governments, but perhaps not as much as some policy makers fear. Families who have cared for loved ones with DD into their adult years are realistic about the effort and time that goes into caring for a person with severe disabilities and are least likely to squander resources on frivolous expenditures. In my experience, when families get together to fill  gaps in the system of services that are lacking in their communities, they are extremely resourceful and marshal community resources that local service agencies are not able to do alone. Of course this means listening to families, respecting their expertise, and allowing them to do what they do best, which is acting as check on a dysfunctional system of services to make it work better for their DD family members.

That's my two cents. There's not much new or original here. It just makes sense in helping both people with developmental disabilities and their families to make the dysfunctional system of care and services work better. Now, what is it exactly that the advocates participating in the Supporting Families conference would do or not do to help families?

One thing is clear. The Supporting Families advocates are not about to stick their necks out and push for any increases in funding to directly provide services to families or to people with DD living at home. With the big push toward deinstitutionalization, which DD Act programs have supported wholeheartedly, the report acknowledges that as supports have shifted to community settings, (page 5) "the demand for long-term supports continues to increase and funding continues to be severely limited. This is further enhanced as the aging of the baby boom generation brings with it an increased need for public resources… These pressures, combined with a weak economy and large federal budget deficits require that developmental disability service systems transform the way they provide services and support. These changes include first recognizing the key role of the family as a primary [and mostly unpaid] source of support and for naming the source of day to day caregiving, and, second, supporting the capacity of the family members to provide needed assistance when necessary over time. Supports to the family unit must be a fundamental consideration in budgetary and long-term care policy as our nation moves forward."

The Supporting Families crew has opted to accept rather than challenge the idea that national economic conditions will inevitably result in fewer services and options for people with DD and their families and that families might as well get used to doing more with less. Where the Supporting Families advocates are willing to help is in supporting the capacity of families to do more with less.

stay tuned for more...

Winter Events in Washtenaw County 2013

Special  Olympics Snow Ball

Friday, January 11, 2013
7 - 10 p.m.
The Michigan League Ballroom at the University of MIchigan
911 North University Ave.
Ann Arbor, MI 48109

• Dress is semi-formal
• Tickets are $5 pre-sale or $7 at the door
• No additional charge for parents/chaperones
• Contact your teacher or coach to purchase tickets

Hosted by University of Michigan pre-health organizations, Alpha Epsilon Delta and Medical Educational Service Opportunities


St. Joe's 5th Annual Sock Hop
Hosted by Joe's Club 5th and 6th grad youth group

Friday, February 8th from 7 - 8:30 p.m.
St. Joseph Parish Center
3430 Dover Dexter, MI 48130
(Parish Center is behind the Village church)
For our friends with Developmental disabilities, ages 16 and over (and a caregiver, please)
Cost: $5 per guest (no charge for caregivers)

Please feel free to call us with any questions!
Contact Liz Aslin at 734-904-4294 or Laura McKenzie at 734-276-7454

Elvis will be in the house again to entertain us with his music of the 50's.
Games and light refreshments available

Dress for the occasion (saddle shoes, jeans, t-shirts, and poodle skirts) or come as you are!

Winter Events at Ann Arbor CIL

The Ann Arbor Center for Independent Living is a welcoming place, especially for people with physical and developmental disabilities. Call the contact numbers below if you have questions.
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Hello everyone,
                Happy new year to all!  The Ann Arbor CIL pleased to announce our upcoming events in January and February.  Please note that some events are exclusively for youth (ages 14 to 26) while others are open to all ages.  We hope you find something of interest look forward to seeing you soon!  Please contact Mary or Anna about signing up for events.

Wii Game Night For All

Join your friends on Wednesday, January 16th from 6-8pm at the Ann Arbor CIL for a video game challenge.  Play popular Wii games such as bowling, golf, baseball, and much more.  If video games aren’t your thing there will be plenty of board games and cards available as well. This event is open to all ages and feel free to bring a friend. Snacks will be provided. RSVP is appreciated.  Contact Anna or Mary with any questions and RSVP.
Mary 734-971-0277 Ex: 22
mary@aacil.org
Anna 734-971-0277 Ex: 17
anna@aacil.org

Motley Crew Party Saturday, January  26th   from 1:00-3:00pm

Join your friends at the Ann Arbor CIL and our wonderful Motley Crew volunteers for some fun and games! The theme will be a surprise! This  event is open to youth ages 14-26. RSVP will also be appreciated.

“Sweet” Valentine Social

Do you love sweets? If so this is an event for you! Join your friends at the Ann Arbor CIL for a sugar filled evening.  You’ll learn how to make assorted candies and cookies. You will have a treat bag to take home with you as well.  We will also have Valentine’s themed games and you will have an opportunity to make a Valentine for the special someone in your life. The event will take place on Monday,  February 11th from 5:30-7:00.  RSVP is appreciated. The event is open to anyone ages 14-26.

Family Casino Night

Have you ever dreamed of stepping inside a casino? Well here’s your chance. You are cordially invited to Ann Arbor CIL’s first Youth Casino Night. The night will be filled with casino night fun including games, music, treats and more. Join your friends on Monday, February 25th from 5:30-7:00. The event is open to all ages and abilities. Contact Anna with your RSVP.
734-971-0277 Ex:17
 

Parents Night Out Video

Washtenaw County, MI: Parents Night Out!

From the Web site of the St. Luke's special needs ministry of Ann Arbor, MI:

Parents Night Out is a respite program for parents who have children with special needs.  This program is offered from 6-9 p.m. on the first Friday of every month from October-June at St. Luke Lutheran Church-Ann Arbor, MI.  Parents can enjoy a break while leaving their children in the care of responsible volunteers. This program is FREE and open to anyone who has a need. Children enjoy activities such as open gym play, crafts, music, and a movie.  Snack time is also provided.  We have no restrictions on age of children or ability level.  Siblings are also welcomed and encouraged to come.  Registration and an R.S.V.P. is required for each evening.  Space is limited to the first 25 children signed up.  

For more information, see the Web site. Watch the beautiful video from the Parents Night Out Program. So many familiar faces.

A Different Path newsletter for parents of special needs children

Washtenaw County, Michigan, is the home of A Different Path newsletter, a non-profit quarterly publication that relies solely on individual donations to cover mailing and printing costs. I have posted the Fall 2012 newsletter here.

As always, A Different Path is written and produced by local parents and is both heartfelt and informative. This issue has an especially good article written by two parents on approaches to using assistive technology with two different children with cerebral palsy. Access to assistive technology is best viewed as an "engineering challenge" that allows children with CP to overcome physical barriers to give them more control over their environment. There is advice on who to talk to and costs for setting up assistive technology systems that work for the child.

Throw a few bucks their way by sending a check to: 

Different Path
P.O. Box 8276
Ann Arbor, MI 48107-8276

Rights Workshop in Howell, Michigan: 10/4/12

A Web site for the Family-to-Family Health Information & Education Center, or F2FHIEC, has loads of information for families with special needs children. According to the Web site, "Our goal is to improve access to quality care and supports for children with special needs in their communities by empowering families." F2FHIEC is funded by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau under the Patient Protection and Affordable Care Act (ACA) of 2010. 

A workshop sponsored by Family-to-Family called "What Are My Rights and Responsibilities and Who Can Help Me Navigate the System?
 " should be helpful to families of adults with disabilities as well as families with special needs children.

This is from the Web site about the workshop in Howell that will be held on October 4, 2012, from 9 a.m. to 3 p.m. at the Livingston ESA, 1425 West Grand River Avenue, Howell, MI :

[The workshop] is for anyone who wants a better understanding of rights, responsibilities and complaint processes including timelines, complaint procedures and what someone could expect during the processes under:

• Children’s Special Health Care Services
• Community Mental Health Services/Hospital Mental Health
• Medicaid
• Special Education Services

Participants will receive resource information for groups and organizations available to assist in navigating systems and protecting a client’s rights. Basic information will be provided on how to gain access to and what makes someone eligible under each system.

Workshop Fee: $10 (Includes Meal)

SBCEUs or SWCEs: $15 [This is for people who need the workshop to count toward certification or accreditation.]

Scholarships: A limited number of scholarships are available for families. Please contact Lisa Cook-Gordon at (800) 359-3722.

Click here to register for the workshop in Howell.
 
Other Training Dates/Times/Locations outside of Southeastern Michigan:

• October 9, 2012 from 9:00 am – 3:00 pm at Eastern Upper Peninsula ISD, 315 Armory Place, Sault Ste. Marie, MI 49783
• October 11, 2012 from 9:00 am – 3:00 pm at Menominee ISD, 1201 41st Avenue, Menominee, MI 49858
• October 29, 2012 from 9:00 am – 3:00 pm at Otsego District Public Library, 219 South Farmer Street, Otsego, MI 49078
• November 12, 2012 from 9:00 am – 3:00 pm at Macomb ISD, Room 104, 44001 Garfield Road, Clinton Township, MI 48038 (586) 228-3321

Indian Trails Camp near Grand Rapids

Here is a note about a new camping opportunity for families in Michigan. Indian Trails Camp, six miles west of Grand Rapids, Michigan, is a camp for people with disabilities that will have its first Family Camp at the end of September. This is from the website:

Family Fun for Everyone!

August 3^rd, 2012

We are so excited to have our first Family Camp this fall from September 29-30!  This will be a wonderful opportunity for everyone in the family to enjoy the joys of camping together, no matter what their abilities are, while strengthening their bonds.  

Each family will have their own cabin for their entire stay and during the day get to choose from different programming options to make their visit as enjoyable as possible.  So whether it's indoor swimming, rock climbing, or creative arts - whatever is most fitting for your family's needs and wants.  And what's camping without ending the day by roasting marshmallows by the camp fire with your family and new friends.

Don't miss out on experiencing camp in an accessible environment where all family members can participate in adaptive activities!  If you are interested or have questions, please feel free to contact us at (616) 677.5251 or info@indiantrailscamp.org

 

Comment #6 (CMS-2249-P2): Limiting Choice by Eliminating Needed Options

The proposed rules contemplate eliminating choices that are deemed “institutional” at the discretion of the Secretary of Health and Human Services:

We note that home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities for mentally retarded, hospitals, or any other locations that have the qualities of an institutional setting as determined by the Secretary. In considering whether a setting has the qualities of an institutional setting, we will exercise a rebuttable presumption that a setting is not a home and community-based setting, and will engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex. We expect to issue further guidance regarding such settings. Other characteristics that could cause CMS to consider a setting as “institutional” or having the qualities of an institution would include, but not be limited to, settings which are isolated from the larger community, do not allow individuals to choose whether or with whom they share a room, limit individuals' freedom of choice on daily living experiences such as meals, visitors, and activities, or limit individuals' opportunities to pursue community activities.

Some of the most creative living arrangements that I have seen or read about have come from parent groups that have designed housing and living situations that fit the needs of their disabled family members. These groups are exceptionally frugal because they have to be. They are usually limited financially and they form strong bonds with community organizations, including churches and other non-profits, to help them achieve their goals.

HCBS waivers can be a major source of funding for individuals participating in these very specialized programs and living arrangements that are usually enthusiastically supported by the individuals themselves and their families. “A rebuttable presumption” that they are somehow “institutional” as determined by and at the discretion of the U.S. Secretary of Health and Human Services could very well harm or destroy some of these projects that have that have involved their communities in being part of their success.

Delete any language that would limit options that are person-centered, consumer-driven, and based on choice.

Agricultural Communities for Adults with Autism

Mother's Day

According to the ACAA website, the "Agricultural Communities for Adults with Autism (ACAA) is a consortium of existing and in-formation organizations focused on sharing best practices and advocating for holistic, agricultural based employment and housing models for adults with autism."

The website continues with:

Our consortium was created to provide information to adults with autism, their families, academics, professionals, legislators, policy makers and others and as a portal to link to our member's sites and other relevant resources. We want to educate people about the common characteristics and differences in agricultural communities in the United States. Our website also exists to dispel the incorrect notion that agricultural communities are institutional, segregated congregate care models when, in fact, our members, residents, and day program participants are strongly woven into the fabric of their respective communities. We are non-urban, low density community based integrated models.

 
Agricultural communities are a terrific option for adults with autism in our community who prefer the choice of a non-urban, community based, active lifestyle that typically combines a variety of rewarding employment opportunities with quality, affordable housing and a wealth of activities in their local communities.

 
All of our communities report no openings and long waiting lists. Turnover is rare because we offer lifespan models. We are contacted daily by people from all over the world who want to have the choice of an agricultural model like one of ours. We give dozens of tours a year to interested adults and their families. We think the only way they will be able to access an agricultural model is to come together with others to create a model in their own area.
Creating a community is difficult but not impossible. Some of us are in formation but many have already created communities. Some have been in place for decades so the models are "time-tested" and successful.

 
A few weeks ago, I wrote a blogpost about Special Dreams Farm in St. Clair Township, Michigan. Another project in Kalamazoo County, Michigan, is called Autism Agricultural Community Option for Residential Needs or AACORN FARM. This link is to a progress report on AACORN's organization. The ACAA website has links to many other groups who have successfully set up agricultural communities or are attempting to do so and other resources.

Special Dreams Farm in St. Clair Township, Michigan

The Detroit Free Press featured an article today - Special Dreams Farm offers life skills to special-needs adults by Alexandra Bahou - about a Michigan farm designed for developmentally disabled adults who want to be active, outdoors, and learn life skills on a farm.

Special Dreams Farm was founded by parents of developmentally disabled adults in 2004. The farmers first worked on private farms until the non-profit organization bought a 31-acre farm in St. Claire Township north of Detroit in 2008. The Farm relies heavily on private donations, fundraisers, and grants for its $140,000 per year operating costs. The farmers are not paid, but they learn skills that help them be more independent. The video and photographs that accompany the article show the delight with which these adults approach their activities on the farm and the close bonds they have with each other and the job coaches and volunteers who work with them.

To learn more about the Special Dreams Farm, go to the Website. 

Here is a page on the Website that has many photographs of the farm and two videos about the farm and how it it came to be.

Disabled adults with nothing to do

This is an article from the VOR Weekly Update:

Founded in 1983, VOR is a national 501(c)(3) organization governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support.

Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. The organization supports the expansion of quality community-based service options and opposes the elimination of the ICFs/MR (institutional) option.

VOR represents primarily individuals with  intellectual disabilities and their families/guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and desires of the family and guardians. 

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Many Adults With Disabilities Do Nothing All Day


A new study concludes that people with developmental disabilities who are inactive each day are also more likely to have severe disabilities, receive fewer resources, and have parents who were less able to provide care. In these cases, a large percentage of siblings also reported having poorer mental and physical health than other siblings as well as weak relationships with their brother or sister, calling into question their viability as long-term caregivers.

Unfortunately, the study’s findings did not consider the impact of residence on level of daily activity. The study included individuals in all settings with the majority (88.9%) living in family homes, group homes, and other small settings, and the remainder in licensed facilities (11.1%). 

VOR feels that the detrimental impact on aging caregivers – parents or siblings – is predictable. People with severe developmental disabilities take more care, more time and energy and over time such caregiving takes its toll. Caregivers have less energy and motivation to search for more services, especially considering the many obstacles to finding services that are often in place. It is our experience that many local agencies do not tell families all that is available or families are discouraged from asking for services due to lack of funding and long waiting lists.

Many years ago, author Fern Kupfer addressed this very real concern:

“No politician is going to say he is against caring for the handicapped, but he can talk in sanctimonious terms about efforts to preserve the family unit, about families remaining independent and self-sufficient. Translated, this means, ‘You got your troubles, I got mine.’” (Kupfer, F., (December 8, 1997). My Turn: Home Is Not For Everyone. Newsweek).

In response to the "Do Nothing" study, one VOR Board Member remarked, “I hope this study is not interpreted as a need to better educate parents to become better caretakers, rather than actually providing services.”

Read related article here from the Website disabilityscoop.

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The study by Julie Lounds Taylor and Robert M. Hodapp, "Doing Nothing: Adults With Disabilities With No Daily Activities and Their Siblings",  is published in AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2012, Vol. 117, No. 1, 67–79

Friends of the Developmentally Disabled, Washtenaw County, MI

Friends of the Developmentally Disabled, (aka Friends of DD) began as a group of families of people with developmental disabilities more than 10 years. Initially, our purpose was to support people with DD in local group homes and in the day program at Washtenaw Community Mental Health. We never organized formally, although we once may have elected a treasurer. This turned out to be unnecessary, because we never had any money. 
 
We have managed for a long time without a formal organization, although, at least until recently, we have met regularly, and we have cranked out a newsletter to go along with the (almost monthly) meeting notices. We tend to have family members whose loved-ones are on the more severe end of the range of people with developmental disabilities, but everyone is welcome to attend our meetings and sign up for the newsletter.
 
When we started, we came up with a set of principles. We rarely refer to this document, but we adhere pretty closely to it. Here it is:

• People with developmental disabilities have diverse needs based on the nature and severity of their disabilities, their experiences, and family circumstances.
• For people with developmental disabilities who cannot speak for themselves, the best advocate is a parent, other family member, or close friend who is aware of the individual’s needs and cares about the welfare of that individual.
• To meet the long-term needs of people with developmental disabilities, a full range of services, programs, and living arrangements, designed to meet their unique needs, must be available and the availability communicated to people with DD and their families.

Our purposes are:

• To ensure the availability and delivery of appropriate services to people with developmental disabilities while protecting the rights and preserving the dignity of those individuals.
• To provide information so that people with developmental disabilities and their families or friends can advocate for themselves to obtain the services they need.
• To communicate with public officials charged with the responsibility for providing services and protecting the rights of the developmentally disabled and to ensure the accountability of public agencies to people with developmental disabilities and the public.

And furthermore, Friends of DD does not dictate to you what is best for your family member or browbeat you into conforming to a particular ideology or belief.  

This year, we have not met as often as we have in past years, but I have been sending out more information by e-mail with frequent updates on issues affecting families and people with disabilities. Friends of DD has joined ddAdvocates of Michigan, an Internet-based network of community organizations and family members. The purpose of ddAdvocates is to provide information to families and friends and apprise them of opportunities to comment on local, state, and national policies affecting people with developmental disabilities.

Jill Barker
Friends of DD
Ann Arbor, MI

More on Michigan's plan for "dual eligibles"

Common Buckeye

If Michigan’s proposal to the federal government for “dual eligibles” were to be implemented, approximately one-third of mental health consumers would have both medical and specialized mental health services managed and financed by a medical health insurance plan. About half the funding for Community Mental Health services would leave the CMH system to pay for the new system of care. Such a plan would affect everyone receiving services under CMH, including people who are covered only by Medicaid.

Most people with DD and other disabilities and their families would have welcomed a discussion on how to improve CMH services. It is a flawed and chronically underfunded system, but at the very least, the principles upon which it is based and the combination of federal, state, and local policies that protect the rights of the people it serves, give most of those individuals a fighting chance for the services they need, not only for survival, but for a life that is fulfilling and meaningful. The state’s plan to reform the system is a radical approach with too many unanswered questions about how it could be implemented.

The Michigan Department of Community Health (MDCH) has now held 6 public forums to receive comments about Michigan’s proposal to integrate dual eligibles. After attending two of these forums, I found no indication that the MDCH was willing or able to answer the many questions that were asked when the plan first came up for public comment. Those questions (see here and here) remain unanswered.

A compilation of information and analysis of the dual eligible plan was distributed at a 9/14/11 meeting of the Community Mental Health Partnership of Southeast Michigan (CMHPSM), an affiliation of the mental health boards for the Counties of Lenawee, Livingston, Monroe, and Washtenaw. This document explains the plan better than anything else I have read. 

Here are some notable quotes from the dual eligible plan analysis mentioned above: 

• “What are we to make of all the signs that portend expansion in the use of Health Plans for duals, moving benefits out of current managing structures [CMH and regional affiliations of CMH agencies]? One appraisal might be that the plan, while arguably audacious, is also ill conceived (perhaps to the point of recklessness), and designed – not to better coordinate care – but to achieve savings, to the detriment of dual eligible beneficiaries…”
• What is puzzling about the MDCH proposal is that it – in effect – transfers crucial Medicaid state plan and … waiver services and supports to be managed by entities that have little or limited experience with the dual eligible population.” 
• “The MDCH proposal also exhibits scant understanding of non-medical (e.g., housing, transportation, linkage with various social service programs, etc.) supports – accessed through other community agencies – that are critical to community inclusion and participation for seriously mentally ill and/or developmentally disabled dual eligibles.”

The 10-page initial proposal that landed Michigan a $1 million contract to develop a plan for dual eligibles can be found here.

The Kaiser Family Foundation summarizes all fifteen state plans that were awarded contracts by CMS in this document: “Proposed Models to Integrate Medicare and Medicaid Benefits for Dual Eligibles…” This policy brief can be downloaded here. Other states that had their plans accepted by CMS proposed more flexible arrangements with some offering different plans for different subpopulations of dual eligibles, a much better approach in my opinion.

These documents are not easy to understand unless you happen to be an expert on health care reform, insurance reform, mental health administration, etc., but they may help you to ask the right questions when you respond to the plans that the state has for you DD family member.

Planned community for adults with DD in Jacksonville, Florida

An article in The Florida Times-Union (jacksonville.com) reports on a project by The ARC of Jacksonville to build a 32-acre community for people with developmental disabilities:

 "The Hodges Community would include independent and semi-independent living, as well as recreational and transportation opportunities and a community center. It is set to break ground in 2013 and would take five to 10 years to build."

The land was donated by a group of families in 1969 with the stipulation that it go to help people with developmental disabilities.

The article also says that, "Plans for the community will include different types of housing, including condominiums, apartments and houses and a few small group homes. Families will be able to choose from a 'menu' of options depending on the person's need." The Jacksonville ARC also contemplates having facilities such as soccer fields for use by the general public  to encourage interaction with residents.

Parents and the ARC of Jacksonville enthusiastically support the plan. Apartment-living has not been successful or possible for many adults with DD and parents hope that the support of a planned community will increase the likelihood of success.

There have been objections to the plan from an organization called Henderson Haven that provides advocacy and community services to people with developmental disabilities. Lee Henderson, executive director of the organization, complains that this is a step backward toward segregation. Full inclusion with supports should be the goal, rather than another form of accepted segregation, as he characterizes the planned community approach.

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Objections have been raised with similar projects in Florida and other states. In my opinion, the objections to housing and services that group people with disabilities together do not hold water. Communal living situations are not necessarily discriminatory and segregating as critics claim, if they are appropriate to the needs of the individual and freely chosen over other options. Even the choice of an institutional option (an Intermediate Care Facility for the Mentally Retarded/Intellectually Disabled - ICF/MR) is supported explicitly by the Supreme Court Olmstead decision. 

The use of the Medicaid Home and Community Based Services waiver that allows states to provide services in the community for people who are otherwise eligible for an ICF/MR, must give the individual the choice of an ICF/MR or have  the written consent of the eligible individual or the person's legal representative to "waive" the institutional option.

The idea that all people with developmental disabilities can be successfully served using community resources in community settings is at best unproven and at worst demonstrably false. Abuse, neglect, and exploitation can happen in any setting, not because of the size of the setting or how it is organized, but because people with developmental disabilities are especially vulnerable to abuse, neglect, and exploitation. That mistreatment, criminal or otherwise, occurs in community settings is documented in grim detail here.

In Florida, there is a waiting list of around 20,000 people with DD who go without services. According to the Web site Left Behind in Florida, the waiting list makes up 40% of all families who have a family member with DD who is eligible for assistance.

A planned community is one more option from which families may choose and should not be seen as competition to fully inclusive settings that many people can benefit from. Projects that originate with the individuals and families who need services and garner support from a wide variety of community organizations are the most likely to succeed, the most likely to use resources wisely, and the most likely to be accepted by the community at large. Here is an example. 

There is no shortage of ideas for improving the lives of people with developmental disabilities, but advocacy groups that deliberately narrow the choices based on their fervent belief in an unproven ideology are an impediment to a system that can truly meet the needs of the full range of people with DD, especially those who are either not served at all or inadequately served by our current system.

Community Resources: Heated pools at the Romulus Athletic Center

It is usually hard to find places that can accommodate my sons for fun recreational activities, but today I discovered a great place for people of all sizes, shapes, and degrees of disability. A gang of kids from Ian's school, High Point School in Ann Arbor, took a field trip to the Romulus Athletic Center to swim and play in their water park.

Water temperature is always a concern for people with severe physical disabilities, even for Ian. He is relatively beefy compared to some of his classmates, but can't tolerate anything that is colder than a warm bath.

The Lazy River Pool, heated to about 88 degrees, has a gentle current that flows around a 240-foot loop and is the closest Ian has every been to river rafting or body surfing. It is also great exercise for people who can walk against the current. Inner tubes are available. Many of the High Point kids use flotation devices that keep their heads above water, but allow them to move freely underneath the surface.
 
The Splash Pool, heated to about 86 degrees, is a large wading pool with lots of surprises, including intermittent geysers, a 150-gallon tipping bucket, a water curtain, and numerous sprayers and water jets. The sound effects are enough for me, but even very young children seemed to be having a wonderful time.

A four-lane Lap Pool, heated to about 80 degrees, is available for real swimmers who can handle deep water (10 feet at one end).

The Hot Tub/Spa is the biggest hot tub I have ever seen. It is heated to 103 degrees and has numerous water jets and bubblers. Children must be at least 16 years old to use the Hot Tub.

Then there is the two-story, 120-foot long water slide (at 86 degrees). Fortunately, it was not open today. There were a number runners and darters in the High Point group who would need to be carefully supervised to even get near this contraption. I'm sure it is thrilling for the right group of people.

The water park has a chair lift that is always available with pool staff to get people in and out of the pool.  There were at least two lifeguards watching at all times that we were there. Most of the pools are accessible by either ramps or shallow steps.

The RAC is owned by the City of Romulus and is located near the Detroit Metro Airport - very easy to get to from I-94 on the Vining Road exit. Fees vary depending on age and residency. A one-time fee for non-residents is $10. The center also has basketball courts, exercise machines, a climbing wall, a cafe and snack bar, a day-care center, an indoor track for running and walking, and many classes and fitness programs.

Who knew?

Community Resources: Waiting for spring at the Botanical Gardens

Anyone who has spent time with my son Danny knows that his mood can fluctuate wildly, between sublime and exuberant joy to extreme irritation and frustration. Even on a good day, he is often cranky. Danny cannot communicate in any specific way about what he is feeling or why he feels the way he does. My educated guess (after 34 years) is that his hypersensitivity to touch and sometimes sound, combined with discomfort related to his severe cerebral palsy including gastrointestinal problems, have a lot to do with it. Danny seems to know, however, what makes him feel better: if he could, he would spend most of his time sitting outside in his wheelchair, listening to the birds, and breathing fresh air.

Winter is a rough time of year for Danny, but we have found an almost perfect place to take him to make the wait for warm weather a little easier. The University of Michigan Matthaei Botanical Gardens in Ann Arbor are full of all the sensory experiences that Danny can appreciate. Although Danny has very little functional vision, he can hear, feel, and smell all that the greenhouses have to offer.

In the tropical greenhouse, the air is warm and humid. There is a fish pond with water dribbling from it and a relatively large water fall whose sound sends Danny into a fit of ecstasy.  We enjoy the lush displays of orchids, the banana trees producing one of Danny's favorite fruits, and we see and smell the new green growth and flowering tropical plants.  We have contributed a couple of overgrown trees to the Botanical Gardens that we visit on each trip - a Key lime tree that we started from seed and a Plumaria, both from Florida. 

The temperate greenhouse is cooler but also light and spring-like. It has a koi pond with water dripping over ferns into a pool. I always stop by the rosemary bush to give Danny a whiff of rosemary and pull gardenias or other sweet smelling flowers close enough for him to inhale. The third house is a dry desert environment that is cooler and houses exotic cacti, Spanish bayonets, Century plants, and other oddities.

Danny can hear the sounds of people milling around, especially small children who delight him with shrieks and chatter. On this particular Sunday, there is something like a scavenger hunt going on where children mark off items on a list of objects and plants that they discover on their route through the greenhouses. As an added bonus, Danny discovers that in the desert house there is black sheet metal along the walls covering up a heating apparatus. Danny finds that it is at wheelchair height and begins pounding on the sheet metal with his right arm. (He also does this when he gets near metal file cabinets or large cardboard boxes as a way to express his inner rowdy nature.) I let him bang on the metal until it gets so loud that some of the children look alarmed and begin staring. There is plenty of room in the greenhouses to move Danny past the temptation to bang on sheet metal, and so we move on. It's not nice to frighten the children.

On our way out we walk through a fine mist that periodically sprays water to humidify the tropical plants. Danny loves the hissing sound the sprayers make and also appreciates the warm dampness that surrounds him.

The botanical gardens are such a delight, that I would hate to spoil the experience by claiming that it does anything to improve Danny's status in the community or that it in any way dispels the notion that some people with disabilities have problems that can't be overcome by high expectations. Watching Danny's infectious joy is enough for us and we suspect that it has not gone unnoticed by our fellow fans of the Botanical Gardens.