Monday, December 15, 2014

More from Ben's Hope: bringing people together

Here is more from Benjamin's Hope, a planned community housing project for adults with autism and other developmental disabilities in Holland, Michigan.

The following article appears in the Ben's Hope 2014 Winter Newsletter. The inspiration for the project and what it hopes to achieve is reflected here. It dispels the notion that communities like Ben's Hope isolate people from their surrounding community and that congregate care is inherently discriminatory against the people who live there. For more information and background on the ideological battles that Ben's Hope has had to endure, see these blogposts (here and here).


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Why Do They Come?
There is something exuberant about life around Benjamin's Hope

Sunday evenings in the summertime found 100+ people worshiping together, under a tent. September's Firelight festival welcomed more than 1,000 friends from all over Western Michigan to enjoy hayrides, music, alpacas, and bonfires. And, by mid-winter, 24 people will call Ben's Hope home.

Benjamin's Hope is bringing people together.

 
The impact of Benjamin's Hope stretches far beyond the men and women who have chosen to live here. We see evidence of it in the people who come. Classrooms from West Ottawa Schools, kids from Camp Geneva, quilters from Christ Memorial Church, and students from Hope College. People young and old. People with disability and people without. Which leads me to ponder, what is the common draw? Why do they come?

Consider the tag line below our logo. "A Place Where We All Belong." This is our answer.

Life runs at a frantic pace. We gauge a day's success by what we have accomplished, our worth too often determined by how we compare to the person next to us.

Is it any wonder that we yearn for a place where we are accepted not for what we do, but simply because we are?

Ben's Hope beckons us to come just as we are. It gives us permission to slow down. From the moment we turn in the drive we are greeted by the Ben's Hope sign assuring us that we have found a place where we all belong.

Awhile back I received a Face Book message from Elizabeth. Elizabeth and her support dog, Mitchell, regularly attend our weekly worship service called The Gathering. Her words beautifully express why she chooses to spend time at Ben's Hope.

"…The Gathering is the best hour of my whole week! I can be around people like me and people who love people like me and I don't have to hide who I am for a whole hour. I love being there. It feels like home, ok?"

So many of you have helped to create this extraordinary place that is so much more than bricks and mortar. Thank you. Benjamin's Hope is an oasis that waters our soul and reminds us to press forward in Hope.

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In case you might be wondering, I do not have any personal stake in the success or lack of success of Ben's Hope. Some advocacy groups have virulently opposed any and all congregate settings, expressing a fear that this type of living will be imposed on others with disabilities who do not want it. I have not heard anyone involved with this or other family-initiated housing projects express a desire to impose their will on others and I suspect they have neither the time, influence, nor energy to do so. --JB

Thursday, December 11, 2014

Innovative Housing Solutions - Who Decides?

[This is an article from the Benjamin's Hope 2014 Winter Newsletter. Ben's Hope is a faith-based community model in Holland, Michigan, "designed to address the multifaceted needs of individuals and families affected by autism and developmental disability." By mid-winter, Ben's Hope will house 24 people in six four-person group homes.]

Policy debate rages about where people with developmental disabilities should live. Urban settings? Rural? Alone or with people? People who are similar? Or, people who are different? Where should the Medicaid dollars be used?

Ultimately it comes down to a discussion about community. what characteristics define community? Who defines community?

At a time when we face a critical shortage of housing options for individuals with developmental disabilities, we also face virulent advocates and policy makers purporting that individuals with disabilities who utilize public funding should not be permitted the choice to live in a setting like Benjamin's Hope, asserting that such settings isolate people. These advocates seek to influence policy to prohibit people with disability the right to use funding to which they are entitled in their setting of choice.

At the 1990 signing of the Americans with Disabilities Act, President George Bush stated, "Today's legislation brings us closer to that day when no Americans will ever again be deprived of their basic guarantees of life, liberty, and the pursuit of happiness."

Yet, in March 2014 the Center for Medicare and Medicaid Services issued Home and Community Based Service rules that oppress innovative, fiscally responsible models that are in high demand by individuals with disabilities and their families. This rule effectively narrows choice.

When asked to share why he has chosen to live at Benjamin's Hope, Lucas VanderKolk (19) wrote these words:

bens hope is a place where everyone is welcome not only to residents but to the community also. I don't have to be scared of not fitting in because everyone is welcome.

I don't have that fear of sticking out like a sore thumb, because it's a place where everyone is welcome and people don't look at me funny or think that I'm stupid because I'm special needs. I never thought there would be such a place like bens hope. I don't have to hide anything ever, i don't have to worry about not fitting in.

I may be different but here at bens hope different is good and i am welcome unlike other places i just fell like i don't and can't fit in but at bens hope i don't have to worry about any of that.

By taking away choice, we stand in danger of returning to a day when people with disability had no voice. Let's not repeat the mistakes of history. Stand with us in protecting the rights of people with disabilities to define for themselves what community means.

Lucas, we hear you.

Saturday, December 6, 2014

Results of a short survey on the ADA will reach thousands of journalists

[This is a slightly modified version of an article in the VOR Weekly News Update for 12/5/14.]

From the Public Insight Network:

   "Next year will mark the 25th anniversary of the Americans with Disabilities Act (ADA). As newsrooms gear up to cover this issue, The Public Insight Network of American Public Media wants to know what it is like to live with a disability 25 years after the Americans with Disabilities Act was passed?


"Have you seen things change since the ADA became law? Do you or someone you know still face discrimination because of a disability?

"Share your insight. This link will take you to the Public Insight Network (PIN) survey page.
   

"Sharing your experience will help shape how PIN partner newsrooms cover this issue. We will not publish your response without your permission."

Why is this relevant?


Olmstead is the Supreme Court decision that interprets the Americans with Disabilities Act (ADA) and what constitutes discrimination with regard to community placement.  Many VOR members have faced “Olmstead implementation” actions that are contrary to the letter and spirit of Olmstead when these actions displace individuals from facility-based settings without regard to choice and need. Similar actions are being taken to limit access to and close community congregate programs and services that serve more than 3 or 4 people with disabilities in a group setting.
    

The Public Insight Survey is an opportunity to help journalists appreciate this aspect of ADA implementation. In VOR’s view, the ADA has helped many individuals with disabilities access public places and employment, thereby improving public awareness; however, many individuals who require access to specialized residential, employment, health care, education, therapies and other services have suffered. The problem is not the ADA itself, but the pursuit of a "community for ALL" ideology ("forced deinstitutionalization"), without regard to individual need, choice or quality of care. These "deinstitutionalization" actions, which separate people from specialized residential, employment, and education services, are done in ADA's name but are expressly contrary to the landmark decision interpreting ADA community placement requirements, Olmstead.  News stories too often focus on the community v. institution debate (surface level) without considering HOW people are being served.

In your responses, you are encouraged to include www.vor.net as a resource for journalists.
    

Your survey responses should be your own, whether or not you share VOR’s perspective.
    

Take the SHORT survey here

Wednesday, December 3, 2014

Videos: CA innovative housing for Autism and other DD

[These are videos from the San Francisco Bay Area Autism Society housing conference, May 10, 2014.]

Part 1: Autism / Developmental Disability Housing Options: The Growing Need

...Soaring demand with lack of housing options

Part 2: Housing Options: Single-Family Home Based Models 

 ...Overview of autism/DD housing options based on a single-family home model, including living with parents, legacy homes, licensed group homes, unlicensed co-ops and adult foster care.

Part 3: Housing Options: Multiplex and Intentional Community Models

...Overview of autism/DD housing options based on multifamily or congregate models, including market-rate apartments, affordable "set-aside" units, investment-based multifamily complexes, and nonprofit intentional communities.

Part 4: Needed Policy Changes

...Overview of many of the policy changes necessary to facilitate the creation of new housing options for adults with autism or developmental disability.  

Monday, December 1, 2014

One Family's Quest for True Integration and Person-Centered Care

[This is from the Fall 2014 VOR print newsletter, "The Voice - news and views of VOR Supporters". Helen Norcross lives in Wyoming.]

Helen Norcross is a firm believer in community integration and a person-centered approach to planning care.

She has been a lifelong advocate for her son, Josh, who has profound behavioral challenges, and recently quit her job in corrections/treatment to work for the Wyoming Independent Living Center.

She knows how integration should look for her Josh, but seriously questions whether the State of Wyoming does.

"For me, community integration and true inclusion means my son is provided with opportunities to live his life to the fullest extent of his abilities while keeping him and others in our community safe," explains Norcross. "It's about really focusing on Josh. It's about person-centered supports, with an emphasis on the person."


Josh's early years

For years, Helen and her family attempted to strike a balance between integration and safety. This involved wiring her family home with buzzers so that they knew where her son was at all times.

"Josh's disabilities make him unsafe for other people and animals," shared Norcross. "We had a responsibility to keep our younger son safe, as well as our understanding neighbors. Still, to live with alarms that the whole neighborhood could hear if Josh went out the door was exhausting and stressful --and certainly did not mean 'community integration' for him."

As Josh grew so did his challenges and needs. "We were all prisoners in our own home, completely isolated," she said.

So, Norcross called in that promise made by the State so many years ago when they adopted Josh, only to find that he along with about 500 other eligible Wyomians with disabilities, faced years of waiting.


Hope evaporates

In March 2014, after over a year of back-and-forth negotiations, the State had finally approved Josh's waiver application as an "emergency case," and, recognizing Josh's profound needs approved funding at the highest level of care and supervision allowed under the waiver.

With approval in hand, Norcross set out to find a provider willing to serve Josh. After 3 months of looking and rejecting providers, or being rejected by providers that did not have the staff or experience necessary, a quality provider was identified and willing to serve Josh and, much to the gratitude of the Norcrosses, also provide for day habilitation which his waiver funding did not cover.

However, Norcross' diligence in finding the right provider for Josh's needs--a person-centered approach to delivering services--backfired because not enough money was spent on Josh's care while Norcross was looking for a provider. The Wyoming Behavioral Health Department assumed Josh did not need these services and significantly cut his approved funding.

"No one thought to call me," said Norcross. "I could have told the Department that the services were not used because I was still trying to find a provider. Josh's needs certainly didn't change. Yet, we were back to square one."

She now wonders just how the Wyoming Behavioral Department defines "person-centered." Having worked in treatment for so many years and also raising Josh, Norcross understands the person-centered approach better than most.

"I've had intensive training in this approach and have seen it work with the most challenging individuals," Norcross said. "It's really about treating people like people and respecting differences in choices and needs."


The Journey Continues

Norcross continues to advocate for Josh using a person-centered approach and will fight to make sure that all funding taken from his Plan of Care will be restored.

Still, she is frustrated by the fight and worries for other families who don't know the system as well.

"Because Josh's behaviors affect other people, putting the community at risk if funds are not restored, there should be urgency to getting him appropriate  care," said Norcross. "My advocacy is critical in helping the State see that urgency, but what about other families who are suffering in silence? I worry about these people."

Norcross also questions how a "systems change" approach toward full inclusion and integration can also be person-centered care.

"'Integration' is being pushed as the ideal, but blindly so," said Norcross. "My family home, wired like prison, is considered 'integrated.'"

Norcross hopes her work with the Wyoming Independent Living Center will provide her opportunity to reframe the dialogue.

"We've lost sight of concepts like 'community integration' and 'person-centered supports,'" she says. Families, advocates and elected officials must re-direct collective focus away from 'bricks and mortar' and back on each individual."

My son's needs are unique and personal to him," added Norcross. "What he needs and what I want for him will be different than another individual and another family. Our system must be responsive to individual needs and choice. I am a fighter and I do not give up. I will continue working to change that."

Sunday, November 30, 2014

MI HCBS Transition Plan - comments due 12/24/14

The Michigan Department of Community Health has released its transition plan for implementation of the federal Home and Community Based settings rule that was issued in January 2014. The announcement begins with a summary of the purposes of the rule. This characterization does not include any of its negative features such as limiting choice for individuals with DD who choose to live or receive services in congregate settings (more than 3 or 4 people with disabilities living  or receiving services together), including planned or intentional communities. Neither does it include exceptions to the rule for health and safety reasons.

To decipher the acronyms used in the transition plan document, refer to page 1, row 1, and the last two columns to the right under "Sources" and "Key Stakeholders". 

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The Centers for Medicare and Medicaid Services recently made a new set of rules for the delivery of Home and Community Based Services through Medicaid waiver programs. Through these rules, the Centers for Medicare and Medicaid Services aim to improve the experience of individuals in these programs by enhancing access to the community, promoting the delivery of services in more integrated settings, and expanding the use of person-centered planning. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting's location, geography, or physical characteristics.

Overview of the Settings Provision


The final rule requires that all home and community-based settings meet certain qualifications. These include:


* The setting is integrated in and supports full access to the greater community;
* Is selected by the individual from among setting options;
* Ensures individual rights of privacy, dignity and respect, and freedom from coercion and restraint;
* Optimizes autonomy and independence in making life choices; and
* Facilitates choice regarding services and who provides them.

The final rule also includes additional requirements for provider-owned or controlled home and community-based residential settings. These requirements include:


* The individual has a lease or other legally enforceable agreement providing similar protections; 

* The individual has privacy in their unit including lockable doors, choice of roommates and freedom to furnish or decorate the unit;
* The individual controls his/her own schedule including access to food at any time;
* The individual can have visitors at any time; and
* The setting is physically accessible.

Below please find links to Michigan's HCBS Transition Plan as well as links to source documents about the HCBS rule change from the Centers for Medicaid and Medicare Services.



The MI Home and Community Based Settings rule Transition Plan

The Department released the draft plan for public comment on November 24, 2014 and will be accepting comments until December 24, 2014. You may submit comments regarding the transition plan by e-mail to:


HCBSTransition@michigan.gov

or by mail to:

Attention: HCBS Program Transition
Medicaid Policy
Michigan Department of Community Health
P.O. Box 30479
Lansing, Michigan 48909-7979

All comments on this topic should include a "HCBS Transition Plan Comment" reference somewhere in the written submission or in the subject line if an e-mail is used. Comments and related responses will be available on this website following the end of the comment period. Please list or summarize your comments in a document or email. Please do not submit an electronic version of the draft statewide transition plan using the "track changes" function.

The purpose of this review and comment on the draft statewide transition plan is to develop and implement the best plan and process possible for review and assessment of settings. Discussion regarding evidence that a particular setting is "home and community-based" and/or similar comments will not be considered. Please limit your comments to the content of the draft plan.

-MDCH Website

Centers for Medicare and Medicaid Services
The Centers for Medicare and Medicaid Services have provided fact sheets, webinar slides, informational bulletins, and toolkits HERE .

Sunday, November 23, 2014

"The Day 'Autism' Died" - a parent's frustration with the language of autism

The Autism Society San Francisco Bay Area blog has a post from a parent who felt the extreme frustration that many others felt when Jerry Seinfeld mentioned in an interview recently that he just might be on the autism spectrum.  Here are excerpts from the blog post:
 
The Day "Autism" Died
by Jill Escher, president of the Autism Society San Francisco Bay Area
11/10/2014
 

The word "autism" died last week, it ceased to retain any power to create a shared understanding, which is, after all, the very purpose of language.

I'm not bemoaning that Jerry Seinfeld felt himself to have some social anxieties or even that he referred to himself as on the autism spectrum, it's just that I'm plain done with the autism community's failure to have developed a robust enough vocabulary to carve out meaningful distinctions among the wildly diverse assortment of profound pathologies and mere personality accents we have come to think of as "autism"….

….absurdly, competent fully and functional people can be popularly understood as having "autism," even though they in no way resemble people like my own children, who are nonverbal, can't dress themselves, cannot play or have a conversation, will never work, will never have friends, and will require lifetime of 24/7 care…

…It's time for reasonably intelligent people to cry, "Enough!" Words can do harm, but perhaps just as importantly, lack of words can do harm. Now with a half million with more severe forms of autism and probably at least as much with higher functioning forms, we need to radically expand our vocabulary to make the practical distinctions necessary for the shared understanding of the needs of this population and the profound challenges they very often face...


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Read more from the Autism Society San Francisco Bay Area Website and Blog: