Thursday, October 14, 2021

Ordinary heroes carry out an evacuation of people with IDD during Hurricane Ida


This is from the VOR newsletter, "The Voice", for Fall 2021. VOR, a Voice Of Reason, is a national nonprofit organization that has been speaking out for people with severe Intellectual and Developmental Disabilities (I/DD) for almost 40 years. VOR members from Louisiana had quite a story to tell about evacuating residents of community homes from New Orleans to safety in Mississippi.

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Ordinary Heroism: Evacuating Crossroads Louisiana During Hurricane Ida

By Susan McIlwain and Mary Kay Cowen, with Hugo Dwyer

How do you keep people with Intellectual and Developmental Disabilities safe during a hurricane?

Since Hurricane Katrina, the state of Louisiana has mandated every facility housing people with I/DD or the elderly to set up an emergency evacuation plan, and to perform annual mock evacuations to ensure that the residents of the facilities will be kept safe. On August 28, 2021, sixteen years to the day after Katrina, Hurricane Ida made landfall in Port Fourchon, just south of New Orleans.

Hurricane Ida was not the first threat to the Louisiana coast this year. Residents track the path and power of each storm to see which one might pose a major threat to their homes and communities. Ida had strengthened and weakened and been somewhat unpredictable in her course for a few days. In late August, it became clear that Ida was growing larger, wetter, and more dangerous, and that she was heading straight towards Southern Louisiana with New Orleans and surrounding areas receiving voluntary and/or mandatory evacuation orders.

Crossroads Louisiana is a non-profit provider founded in 1982 by Dr. Gerald Murphy to serve persons with I/DD in the Greater New Orleans area. Crossroads is currently run by Executive Director Susan McIlwain. The facility now consists of six 6-bed community homes, all ICF [Intermediate Care Facility] certified. They also oversee a Supervised Independent Living (SIL) program in which another 36 individuals live throughout the community in private homes or apartments.

24 hours before Ida was expected to make landfall, Susan made the call to move all of the seventy-two residents to safer ground at Camp Hopewell, a Christian Retreat located some 350 miles to the north in Oxford, MS. This was to be the second time that Crossroads had evacuated to Camp Hopewell, the first being during Hurricane Gustav in 2008. Crossroads has a written procedural manual for evacuation, and the staff had practiced mock evacuations annually, fine tuning and improving the procedures every time. Still, planning and trial runs are one thing. When a crisis hits, it’s all about execution.

Staff were contacted and asked if they could join in the evacuation and bring their families, or if they and their families had made other plans. She called on families of the residents, to see if they could help out. Among those families were Mary Kay and Mark Cowen. Mary Kay’s brother Tommy is a resident of one of the homes, and her husband Mark had catered many of their meals and was well known to the Crossroads family. Mary Kay and Mark packed up and left early Friday morning, to get to Camp Hopewell to obtain food and set up for the others. Meanwhile, Susan and the staff packed up sheets, towels, adult briefs, games, and anything else that might be needed, They hired a bus, loaded up Crossroads’ 13 mini-buses, and set out with staff and families in their own cars late at night, so that the residents would all have eaten, taken their medications, and be ready to sleep for most of the six- to seven-hour journey to Oxford.

When the caravan arrived the next morning, Mark and Mary Kay had set up to feed the weary travelers. Between the seventy residents, the staff and their families, and the families of the residents who came to help out, the group numbered around 140 people. Due to the Covid pandemic, Camp Hopewell had not been running most of its usual summer programs and retreats, so they were able to accommodate everyone. Families that owned pets had brought their dogs and cats and even a pet lizard (a bearded dragon, to be exact). Beds were assigned to residents and their families, though some of the families chose to relocate to motels nearby.

The evacuation plan had been written with specific tasks and responsibilities assigned to directors, program managers, and supervisors, who then worked with residential staff and volunteers to make sure that all of the residents’ needs were being met. It didn’t take long for the group to develop a new daily routine, some of it mirroring the daily activities from back home, some of it adjusted to the camp environment, and some of it adapted to the fact that they were working with a smaller staff augmented by volunteers.

Every day meant buying more food and necessities at a nearby Sam’s, cooking, cleaning, and of course, keeping the Crossroads residents active and entertained. Remarkably, there were very few incidents during these two weeks, either behavioral or medical, and all were of a minor nature. While the staff and families put in extra effort to make sure everything was running smoothly, the residents generally experienced the evacuation like two weeks at camp. And that’s exactly the way it was supposed to be.

“It was non-stop,” Susan remarked. “And until we were coming home, I didn’t realize how long we had been there. You do this, and do this and do this, and completely lose track of time. You don’t even think about it. You just do what you gotta do.”

Mary Kay describes watching all of this unfold, and getting to see the daily process of Crossroads’ work, “It never ceases to amaze me, what they do. You think you know about what’s happening on the surface, going on up front. But until you really experience what’s going on in the background, see it from the inside, you really don’t understand the challenges it takes to do what Crossroads and people like Crossroads do every day. I thought I had a clue, but this really opened my eyes.”

Once the storm had passed, a team of four traveled back to New Orleans to evaluate damage. They spent the day evaluating the situation, confirming that homes were safe, repairs were arranged, refrigerators and freezers were or would be secured or cleaned out. Once staff that remained in New Orleans had confirmed all of the client homes had electricity and usable water to Susan, she signaled that the group return with the least amount of disruption to care. At that point, groceries and other supplies (including gas) were obtained, everyone packed up their things, got back onto the buses and into their cars, and lined up for the caravan back to New Orleans.

The Crossroads group stayed at Camp Hopewell for thirteen days before being able to move back home. They’ve been back about two days at the time of this writing, and things are nowhere near back to normal. One home remains closed due to a bureaucratic snafu at one of the state agencies. There are still long lines for food and supplies. Folks are settling back in, but it will be a while before everything in New Orleans returns to normal.

The costs of this evacuation were extensive. Food for the group was estimated to have cost anywhere from $1,000 to over $1,200 per day. The motel rooms ran about $5,000 to $6,000. The bus cost about $2,500, plus the cost of gas for all of the vehicles. The stay at the campground itself cost about $30,000. Susan estimates the total for the evacuation will come in at around $60,000 or higher. Crossroads won’t receive any additional state or federal assistance for this evacuation, either. It’s all coming out of their own pocket.

Of course, there’s that other thing. There’s that thing that can’t be measured, that thing that can’t be written into an evacuation plan or assigned as a task. It’s that special thing that you feel, that you can see in the day-to-day workings of a group of ordinary people rising to meet the challenges of extraordinary circumstances. The success of this evacuation, the physical and emotional health of the Crossroads clients, and staff, and all of their families, the ability for everyone to just get it all done for two weeks during a crisis, it all boils down to the love and devotion of those involved. That’s what it’s all about.

Mary Kay Cowen has long been a member of the VOR Board of Directors.
Susan McIlwain, Executive Director of Crossroads Louisiana, has also served as a member of the Board and has participated in several of our Annual Conferences in Washington, D.C.

For more information about Crossroads Louisiana, or to make a contribution to help offset the costs of the evacuation, please go to https://crossroadslouisiana.org/ .

Tuesday, October 12, 2021

The Future of Michigan Politics: Proposed Redistricting Maps from the Independent Commission

The Detroit Free Press, in an article by Clara Hendrickson and Todd Spangler, "Michigan's draft redistricting maps approved, will be taken to the public next", 10/12/21, reports on proposed maps by the new Independent Redistricting Commission establishing Congressional and State House and Senate districts based on the 2020 census.

It's complicated but important to the state's political future. So far, the commission is offering three sets of maps for public comment later this month to untangle "the gerrymandered boundaries put in place by a Republican state legislature and governor a decade ago, when new lines were drawn after the last Census."

The proposed maps, compared to the current districting maps, are less lopsided in favoring Republicans overall . They give a slight edge to Democrats in Congressional races and a slight edge to Republicans in state house and senate races. It will shake-up the status quo in many areas of the state, including in the Ann Arbor area which is heavily Democratic and in heavily Republican Southwest Michigan. 

The methods used in drawing the maps are in part based on voting patterns over the last ten years, but this is not the only consideration.

"Some of the proposed maps drawn by the commission would skew Republican, according to the commission's measures. But no plan matches the GOP advantage for the current districts drawn by Republicans in 2011, according to those measures.  
 
"The commission has been repeatedly urged to attempt to get its fairness scores as close to zero partisan bias as possible. 

"The commission's general counsel has told the group that it is not required to draw maps that would score zero on measures of partisan fairness. 'A lot of the very passionate public comment was for everything to be equal. That is not what your constitutional language is,' Julianne Pastula, the commission's general counsel, said."

 
Public hearing schedule

The commission will hold five public hearings across the state to solicit input on its maps. The hearings will be held from 1-3:30 p.m. and 5-8 p.m. with the commission conducting its business until 2:30 p.m. before kicking off the hearing. The public hearings will take place on the following dates:
  • Weds., Oct. 20: Detroit, TCF Center
  • Thurs., Oct. 21: Lansing, Lansing Center
  • Fri., Oct. 22: Grand Rapids, location to be determined
  • Mon., Oct. 25: Gaylord, Treetops Resort
  • Tues., Oct. 26: Flint, Dort Financial Center
Members of the public can also submit written public comments and draft maps via www.michigan-mapping.org or comment on the commission's draft maps available at www.michigan.gov/micrc

The final maps of Congressional and State House and Senate Districts will be issued by December 30, 2021.

Wednesday, October 6, 2021

ACT Now for Severe Autism Campaign from Together For Choice


  

 Organizations supporting Act Now for Severe Autism: Voice Of Reason (VOR), National Council on Severe Autism (NCSA), ICF Advocates for Choice, Together For Choice (TFC), Autism Science Foundation (ASF), EASI Foundation, The Council of Autism Service Providers (CASP), RCPA

 

Group Warns of Escalating Health and Safety Crisis in I/DD Community

Releases Video to Increase Awareness

Calls to End One-Size-Fits-All Policy Solutions

[This video is extremely hard to watch, but it is real. I have known many families who have gone through this special kind of Hell. Not only do they face a daily struggle to keep their child safe from self-inflicted injuries, but they do it with minimal outside help and sometimes no sleep or any other form of relief. They are shamed and blamed by some disability rights organizations for somehow causing their child's disabilities. Rather than recognizing how extreme and different children and adults with severe autism can be from others with forms of autism that are not as debilitating, the neurodiversity movement  treats them as an embarrassment. People with severe autism belie the claim by some disability rights advocates that severe autism does not exist and that no special consideration is warranted.]

More from Together For Choice:

Together for Choice Joins with RCPA, Parents to Launch ACT Now for Severe Autism Campaign

Harrisburg, Pennsylvania – Together for Choice, a national advocacy organization formed to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD), today announced the ACT NOW for Severe Autism Campaign with a consortium of partners, including the Rehabilitation and Community Providers Association (RCPA), concerned parents and other advocates. The campaign seeks to shine light on the growing health and safety crisis involving individuals with severe autism and change policies that deprive them of the services they need.

“For too long, individuals with severe autism have remained in the shadows and all too-often forgotten in policy discussions,” said Ashley Kim Weiss, National Coordinator of Together for Choice. “Most of the attention and resources have been devoted to integrating high functioning members of the I/DD community into society, which we agree is important. Equally important, however, are the most vulnerable individuals with severe disabilities who can never fully integrate and are in desperate need of customized care and support to live healthy and productive lives.

The group promoted a video, which first debuted at the RCPA Conference held in Pennsylvania last week. A parent of a severely autistic child self-financed and produced the video to combat the increasing claims of the highly vocal and publicly visible advocates of the neurodiversity community, that severe autism does not exist. Or worse yet, that the needs of those individuals with severe autism are no different than the needs of any other individual diagnosed with autism.

“While the video is at times uncomfortable to watch, it is critical that the public see the realities that these individuals and families face on a daily basis,” said Richard S. Edley, President and CEO of RCPA. “We need more resources and more flexible policy solutions to address this growing crisis. One-size-fits-all solutions must end. We must recognize that one-size does not fit everyone. People will always be left out – and sadly, it is often the most vulnerable who are forgotten."

The group also launched a website at http://actnowforsevereautism.com/ which houses the video and contains a petition to end these policies as well as more information about how the public can get involved and advocate for change in policies that discriminate against individuals with severe autism and their families.

About Together for Choice

Together for Choice (TFC) is a non-profit organization with a mission to unite to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD) to live, work and thrive in a community or setting of their choice. Please visit www.togetherforchoice.org for more information.

About the Rehabilitation and Community Providers Association:

With well over 350 members, the majority of who serve over 1 million Pennsylvanians annually, Rehabilitation and Community Providers Association (RCPA) is among the largest and most diverse state health and human services trade associations in the nation. RCPA advocates for those in need, works to advance effective state and federal public policies, serves as a forum for the exchange of information and experience, and provides professional support to members. RCPA provider members offer mental health, drug and alcohol, intellectual and developmental disabilities, children’s, brain injury, medical rehabilitation, and physical disabilities and aging services, through all settings and levels of care. Visit www.paproviders.org for more information.

Contact for TFC:

Ashley Kim Weiss, National Coordinator

ashley@togetherforchoice.org

Contact for RCPA:

Richard S. Edley, PhD, President and CEO Rehabilitation and Community Providers Association (RCPA)

redley@paproviders.org

Monday, October 4, 2021

Call to dismantle barriers to developing autism friendly affordable housing

When more than three or four people with disabilities live together, either out of friendship or to share resources with people with common interests and needs, some disability rights advocates condemn the practice and compare it to life in institutions of more than fifty years ago. Whether it is a group home or a larger intentional community or a publicly or privately operated facility, they are all bad according to these advocates.

Touring a 21-unit disability housing complex in Gilroy, CA, Jill Escher describes how congregate housing for people with autism and other development disabilities are needed to tackle the problem of serving and housing people with severe disabilities. 

Encouraging these projects is better than attempting to sabotage them in the name of disability rights. 

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I visited a 21-unit disability housing complex and it was nothing remotely like an "institution"

A disability housing advocate calls for the dismantling of bureaucratic obstacles preventing the development of autism-friendly affordable housing.

by Jill Escher
8/31/21
 

One of the most ludicrous and damaging battles waged by so-called “disability rights” activists is their deranged crusade to de-fund congregate-style residential facilities, which they routinely likened to “institutions” of old that once housed 1000’s of residents. It is of course nonsense, but this line of absurdist reasoning has already had a damaging chilling effect on needed developments aimed at the intensive needs of the autistic and developmentally disabled. Any development with more than a handful of disabled residents can become the target of immediate witch-hunt-like suspicion, and as a consequence, many projects die before they can get off paper.

This insane self-sabotage came to mind as I recently toured a lovely 20 year-old housing development in Gilroy, California, located some 30 miles south of the Silicon Valley area. Villa Esperanza was built in the late 1990s when it was still totally cool, and indeed noble!, to say, “We are creating housing for the developmentally disabled.” This was before groups like the Autistic Self Advocacy Network and others routinely hurled poisonous accusations at such developments calling them “isolating” and “institutional.”

The primary goal of Villa Esperanza, created by a nonprofit housing developer, was the provision of affordable housing for adult developmentally disabled individuals and their families. It received a construction loan (Section 811) from HUD and smaller loans as well. Other local nonprofits were involved in the planning, and now the administration. For the past two decades it has provided 21 units of desperately needed housing at affordable rates. The person with DD pays a portion of the rent (perhaps about $300, representing 1/3 of their SSI income), while the balance is paid by the county Housing Authority with HUD funds. Some tenants live independently, some with roommates, some with professional supports chosen by the client. Most tenants access the community on a regular basis and attend supported employment or day programs. The mini-campus also features a community room for social gatherings. 

As I toured the grounds I could only think, “Given the skyrocketing rates of autism, why are there not Villa Esperanzas everywhere? Why isn’t this model — a public-private partnership providing affordable, subsidized units to DD adults in a safe, serene setting — a go-to norm for our population?” ...

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Read More at the Blog for the National Council on Severe Autism (NCSA)

Washtenaw County Commisioners seek citizen volunteers

Monday, October 4, 2021

This is news from the League of Women Voters Washtenaw County:

Washtenaw County Board of Commissioners seeks citizen volunteers 

The Washtenaw County Board of Commissioners is looking for citizens to volunteer for a slate of positions on various Boards, Committees and Commissions. The Board of Commissioners will make these appointments at its upcoming session on December 1, 2021 at 6:45 p.m. held virtually via Zoom due to the Covid-19 pandemic. APPLICATION DEADLINE IS OCTOBER 29.

Individuals interested in applying should submit a letter of interest and resume, including a home address, to the Washtenaw County Clerk’s office, Attention: Appointments, P.O. Box 8645, Ann Arbor, Michigan 48107. 

Letters and resumes may also be submitted via email to mulcihyr@washtenaw.org, via fax (734) 222-6528, or apply online at https://ewashtenaw.formstack.com/forms/board_application.

Those resumes received by October 29, 2021, will be submitted to the Board of Commissioners for its consideration on December 1, 2021. The appointments will become effective January 1, 2022.

You can access the list of openings here: https://www.washtenaw.org/CivicAlerts.aspx?AID=1789 

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Follow the link above for a description of the Boards that are seeking members and the specific requirements for selection. Even if you may not be the person they are looking for, you might know someone who is. Many of these Boards make decisions that affect you or your family member with a disability.