Valentine's Day 2019 - La Vie En Rose

U.N. World Autism Awareness Day 2017 reveals hostility to families caring for people with severe autism

In a new blogpost from the National Council on Severe Autism (NCSA), "Autism Fantasies v. Autism Realities at the United Nations", 2/13/19, Lisa McCauley Parles discusses her experience speaking on behalf of her autistic son and others like him at the 2017 U.N. Autism Awareness Day:

"Two years ago, when I was asked to speak at The United Nations for World Autism Awareness Day I was honored. When I saw that the topic was 'The Road to Independent Living,' I wondered if the organizers were familiar with my work focusing on individuals with severe autism. But after I was told they were looking for a variety of perspectives, I eagerly accepted the invitation. As I sat in the great hall listening to other speakers I was surprised, saddened and then truly angered. 

"Though I have worked in the area of autism advocacy for decades, I had never encountered such direct hostility toward families and guardians struggling to help and protect their severely disabled loved ones...

"As parents were portrayed as controlling enslavers my anger grew. When a speaker proclaimed that guardianship is 'the equivalent of slavery and genital mutilation' it boiled over. On that day at the U.N. I was overwhelmed by the intense need to tell our stories, to organize families, researchers, providers and others and to bring facts and reality forward."

..."World Autism Awareness Day is this Tuesday, April 2, 2019. Will the public and world leaders again be fed a narrative that ignores our population with severe autism and vilifies parents? Let's hope not. The launch of the NCSA is a critical step towards effective advocacy for the needs of individuals with severe autism and their families. For more information, see ncsautism.org."

Lisa McCauley Parles is an attorney based in New Jersey. She is a member of the board of NCSA.

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See also "Parent-Blaming and Autism: Tragically Trending Again", by Jonathan Mitchell, 2/7/19

Washtenaw County, MI: Special Needs Planning

This is an announcement for a presentation on planning for the future of your DD adult. I have heard Joelle speak several times and I am impressed by her knowledge of and personal experience with people who are developmentally disabled:



The Special Needs Planning Toolbox 

Wednesday, March 20, 2019 
6:30 p.m. to 8:30 p.m. 

Washtenaw Intermediate School District 

1819 South Wagner Road, Ann Arbor 

RSVP by March 15 to Megan Kiser: kiser@mielderlaw.com, (734) 352-6950, or online at mielderlaw.com

Help your child transition to adulthood and independence with information on:

• Planning ahead to secure government benefits 
• Options for supplementing government benefits 
• Creating goals for independent living 

Presented by: Joelle Gurnoe-Adams 

Joelle focuses her practice on special needs and estate planning, trust administration, guardianship, and conservatorship, and advising families who have a loved one that is elderly or has a disability. She received her Bachelor’s degree from the University of Michigan and her Juris Doctorate with honors from Wayne State University Law School. Joelle has received several honors for her work including Washtenaw County Human Services Communication Skills Award, the Mark Weiss Endowment for Public Interest Achievement, and Bergstrom Child Welfare Law Fellowship.

Wayne County, MI, Advocates for IDD: Workshops on Medicaid, employment, and housing

This is an announcement of events in Wayne County, Michigan, from parent/advocate Ed Diegel:

During the last several election cycles I heard only Barack Obama mention that in addition to providing Medical services to the needy, Medicaid also provides funding for the intellectually and developmentally disabled, the mentally ill and persons suffering with substance abuse. Furthermore, in my state district during the 2018 election,  the Michigan Republican Party flooded the district with fliers suggesting that extending Medicaid would only extend Medicaid fraud, inferring in effect that all Medicaid recipients are lazy and fraudulent. 

My friends, it is you and I who are responsible for allowing politicians and our friends and neighbors to harbor the idea that Medicaid is BAD. We need to do a much better job of being honest and effective and speaking out about the tremendous benefit to our individuals and communities that this program delivers. In addition there are issues being discussed in Lansing and Washington that have potentially severe impacts across the board and specifically on funding and on group home and workshop settings that need our attention.

Community Opportunity Center together with STEP and MALA is sponsoring the legislative issues and advocacy training workshop described below. Persons ready to speak up are encouraged to sign up for the workshop. Position papers of current issues, tips on effective lobbying and legislator town hall and in district coffee schedules will be provided.

Two workshop dates are available. Please see the following for detail:

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You Are Encouraged To Attend A Family Advocacy Training Session

Sponsored by: Community Opportunity Center and Services to Enhance Potential

Two Sessions Offered:

February 12, 2019 5pm-8pm

February 16, 2019 10am-2pm

Location: Community Opportunity Center
14147 Farmington Rd., Livonia, MI 48154

Educating legislators about the importance of Medicaid funding and about the needs and circumstances of our loved ones is essential if we wish to influence legislation and funding sources for their benefit. Issues related to housing and employment are under review and new legislation has been created at the federal level, which may have an impact on services our loved ones receive. For this reason, COC and STEP would like to meet with interested families and other support persons to discuss these issues and create an advocacy group, which in turn can share information with local, state, and Federal legislators regarding the impact of these legislative changes. 

If you wish to attend one of these sessions and to learn more about these issues, please contact Joyce Franks at, 734-422-1020 or jfranks@cochomes.net by Friday February 8, 2019. 

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Thanks, I hope to see you at the session. It's up to us to spread the word!!! 

Ed Diegel,

Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com

Washtenaw County: Approaches for Dementia Care for Adults with IDD

2/4/19

St. Louis Center in Chelsea, Michigan, is a residential community for people with intellectual and Developmental Disabilities. A presentation focusing on dementia care will be held on Wednesday, February 20, 2019. 

See the SLC website for other St. Louis Center programs and legacy projects.

Securing the Future for Families with Special Needs

Protect, Provide and Prosper

Approaches for Dementia: Origins, Present Status, and Future Directions

WEDNESDAY, FEBRUARY 20, 2019 | 7-9 PM

St. Louis Center Family Welcome and Orientation Center

16195 W. Old US Hwy. 12,
Chelsea, MI 48118

In this presentation we will examine how the Montessori Method, originally developed to educate children, evolved into an effective method for working with persons with dementia. Initially focusing on activities for persons with dementia, the process of translating the Montessori Method to a geriatric population with memory impairment (Montessori-Based Dementia Programming®) will be detailed. Persons with dementia, like all persons, wish to be treated with respect, dignity, and equality. They want purpose and meaning in their lives, to be in control of their lives, to feel safe, and to be able to contribute to their communities and to society in general. This focus now is being expanded to persons without dementia, including family members and staff members, and persons with developmental disabilities, because the Montessori Inspired Lifestyle® is, basically, a way of living a good life as a human being.

SPEAKER:

DR. CAMERON J. CAMP, PH.D originally developed the use of the Montessori Method as an intervention for use with persons with dementia. He is a noted psychologist specializing in applied research in gerontology, and currently serves as Director of Research and Development for the Center for Applied Research in Dementia. 

Dr. Camp gives workshops on designing cognitive and behavioral interventions for dementia internationally. These interventions are all designed to reduce challenging behaviors and increase the level of functioning and quality of life of persons with dementia. He has co-authored three college textbooks and published over 150 peer-reviewed articles and book chapters. Dr. Camp is a Fellow and past-president of Division 20 (Adult Development and Aging) of the American Psychological Association, a Fellow of the Gerontological Society of America, and a Charter Member of the Association for Psychological Science. His research has been funded by grants from the National Institutes of Health, and the national Alzheimer’s Association. He is recipient of the American Psychological Association Award for Distinguished Professional Contributions to Applied Research.

For more information or to RSVP contact PR Director Joe Yekulis at joey@stlouiscenter.org or 734-475-8430

New Organization on Severe Autism

Autism is not one of the disabilities that my two adult sons have had to deal with. My awareness of autism goes back to the late 1970’s and the struggle to get schools to fulfill their obligation to make available a “Free and Appropriate Public Education” (FAPE) to every disabled child. Autism was not an official category defined by federal regulations at the time, but most children with autism fit under one or another of the categories listed and because of their disabilities needed special education. 

I knew families whose children had been diagnosed with autism and other related disabilities that would fit the definition of autism as it is now understood. The difference is that forty years ago, I never heard anyone talk about “high-functioning” autism or any of its milder forms. The manifestation of the disability was almost always severe and was often combined with intellectual disability, severe language impairment, and behaviors that interfered with education in regular classrooms and sometimes caused self-injuries or injury to other family members.

As a non-expert, I do not pretend to know enough to explain the explosion in autism diagnosis, but cases of severe autism have not abated. The needs of this population are growing, especially with the aging of family caregivers and the tendency for some advocacy groups to turn their backs on people with the most severe disabilities in favor of presenting an optimistic and more palatable image to the public and policy makers. If I had to rely on presenting a “positive” image of my children now and in the future to justify spending on services for them, I would be sabotaging the prospect of them receiving services that are both appropriate to their needs and effective in preventing harm.

A new organization called the National Council on Severe Autism (NCSA) has been launched “Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.” 

This from a press release on 1/10/19:

“…The new organization is created to address pragmatically the many serious challenges in services, housing, and policy facing families, caregivers and individuals affected by severe forms of autism and related disorders.

“‘Autism is often romanticized and sugar-coated in the media and social media,’ said Jill Escher, NCSA President. ‘In contrast, our efforts will be guided by pragmatic realities. For countless families devoted to the well being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.’….”

The organization has gotten off to a good start with a Website that presents their reason for being, policy statements, and an active blog .

From the NCSA blog:

If you wish to Share your story, the NCSA wants to hear from you:

Please share with us your story and concerns, and also your ideas about how to improve the lives and prospects for all those affected by severe forms of autism and related disorders. Topics may include, for example:

• Housing and long-term supports
• Education and training
• Day programs and employment
• Medical care and therapeutics
• Behavioral crisis and crisis care
• Financial issues
• Autism research
• Individual, parent and family well-being

Your information will help inform NCSA’s efforts, and will be kept confidential. If follow-up information is needed, we will contact you. Thank you for your generous assistance and time...

Amy Lutz, a parent of an adult with severe autism, writes about the organization on the Inspectrum blog from Psychology Today: "National Council on Severe Autism (NCSA) Launches; New organization will advocate 'for those who cannot speak for themselves.'", 1/14/19.

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For more information: 

Website: ncsautism.org
Email: info@ncsautism.org
Facebook: https://www.facebook.com/ncsautism/
Twitter: @ncsautismorg

Mail:

National Council on Severe Autism
PO Box 26853
San Jose, CA 95159-6853

Michigan 2019: Tackling water contamination

An article from Mlive.com, "State employees required to report health, safety threats in Gov. Whitmer’s first executive directive" by Emily Lawler, 1/2/19, reports on the new Governor's first executive directive of her administration that begins to tackle the problem of water contamination in Michigan.

Governor Gretchen Whitmer signed her first executive order on 1/2/19 establishing a chain of command for state employees to report threats to public health and safety. 

"'The people of Michigan deserve to know that their government is working for them, and our government employees deserve to know that they can speak up when they see threats to Michigan’s health and safety,' Whitmer said before signing her first executive order."

The order was in part a response to the Flint water crisis where a state-appointed emergency manager failed to act to protect the city against lead contamination of its water supply. 

Another worrisome source of water contamination in Michigan was covered by Garrett Ellison on Mlive.com, "Major warning about Michigan PFAS crisis came 6 years ago" on 7/12/18. PFAS (Per- and polyfluoroalkyl substances) have been found in Michigan waterways and drinking water supplies. Robert Delaney, a veteran geologist at the Department of Environmental Quality “..took his concerns about per- and polyfluoroalkyl substances, or PFAS, to state environmental leaders more than six years ago in a prophetic report that called for decisive action on a looming health crisis…His alarm bell was largely ignored.” 

“‘Communities with fire training facilities, other Department of Defense (DOD) bases, metal platers, other major airports, major transportation corridors, and other industrialized areas all could have extensive contamination by (PFAS),’ Delaney wrote.”

“…nearly six years after Delaney's warning about the dangers and potential ubiquity of PFAS, his predictions are coming true. Numerous sites around Michigan have known PFAS plumes and the list keeps growing as testing and attention escalates. So far, the number is 31 and counting across 15 communities, where neighbors are questioning whether contaminated water is to blame for chronic diseases.” 

A few months ago we began seeing signs along our beloved Huron River warning us not to eat the fish. And that white foam that we see on the banks from time to time may be related to PFAs.

Among the sources of contamination are fire retardents, food packaging materials, numerous household products, and drinking water.

“Following an October 2010 presentation on PFAS to the EPA, Department of Defense and an interstate regulatory group, Delaney wrote that his talk was 'well received, if you consider stunned silence a good reception.'" 

There is more information on PFAS from the US Environmental Protection Agency (EPA) Website :

“…Studies indicate that PFOA and PFOS can cause reproductive and developmental, liver and kidney, and immunological effects in laboratory animals. Both chemicals have caused tumors in animals. The most consistent findings are increased cholesterol levels among exposed populations, with more limited findings related to:

• low infant birth weights, 
• effects on the immune system, 
• cancer (for PFOA), and 
• thyroid hormone disruption (for PFOS). "

Finding and reporting on sites of contamination are the first step in protecting citizens against the effects of PFAS. This is especially important in light of the apparent attempt to suppress Delaney's 2012 report and restricting Delaney's access to news media:

"Although Delaney has been a regularly accessible expert on PFAS contamination in Michigan, his freedom to speak with news media was curtailed at DEQ last fall [2017] after he talked about the report on the radio. The agency would not make him available for this story despite multiple requests over several months.

Requiring state officials to warn the public about risks to health and safety should have gone without saying, but the Governor’s first executive directive removes any ambiguity on this issue.