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Tuesday, August 20, 2019

The World’s Longest Down's Syndrome Marriage Ends At 25 Years As Husband Passes Away



Kris and Paul Scharoun-DeForge lived a real-life Romeo And Juliet tale of forbidden, or rather unconventional, love. While their families didn’t hold them apart, society, in general, has typically seen people with Down’s Syndrome as incapable of a mature romantic relationship, much less a marriage of over two decades.

These two beat the odds and proved love doesn’t have boundaries.

Love Doesn’t Fit In A Neat Box

Love is more than a word. It’s beyond an emotional state. No, love is a verb. It’s a force. It drives people to do incredible things and overcome unimaginable obstacles. Something full of such wonder simply can’t be labeled, put in a box, and placed neatly on a shelf.

Nothing proves this more than the love story of Kris and Paul Scharoun-DeForge, both of whom were diagnosed with Down’s syndrome as children. The two love birds met over 30 years ago at a dance. It was an instant connection and attraction.

To read more on this story, click here: The World’s Longest Down's Syndrome Marriage Ends At 25 Years As Husband Passes Away


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DOL Declares That Parent Attendance at School IEP Meetings Are Covered by the FMLA



Good news for parents of kids with disabilities! Time off work to attend Individualized Education Plan (IEP) meetings is covered by the Family Medical Leave Act (FMLA)!

If I gave you a million tries, you’d never guess that the next Department of Labor FMLA opinion letter would answer the question [wait for it . . .]: Is an employee’s attendance at a child’s IEP meeting covered by the FMLA?

The Answer? Yes. Most definitely, yes.

In an opinion letter issued yesterday, the DOL concluded that the FMLA covers an employee’s attendance at a school meeting where their child’s individualized education program (IEP) will be discussed.

The Facts

Interestingly, the request for an opinion letter came from a set of parents whose two children have serious health conditions.  The employer for one of the parents approved intermittent FMLA leave to transport their children to and from medical appointments, but refused a request to take intermittent FMLA leave to attend school meetings.

As background, their children currently receive “pediatrician-prescribed occupational, speech, and physical therapy provided by their school district.”  Additionally, on four occasions throughout the school year, their school holds IEP meetings to “review their educational and medical needs, well-being, and progress.”  These IEP meetings include participation by a speech pathologist, school psychologist, occupational therapist and/or physical therapist employed or contracted by the school district, all of whom provide services to the child under the child’s IEP.  The child’s teachers and school administrators also attend. [In case you’re wondering, an IEP outlines the program of special education instruction, support and services a child with a disability will receive as part of their education program. Each program is designed to meet a child’s exact needs.]

To read more on this story, click here: DOL Declares That Parent Attendance at School IEP Meetings Are Covered by the FMLA


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ANCOR Testifies with DC Advocates on City Bill for Higher DSP Wages



On June 13, a coalition of disability advocates, providers, community non-profit organizations and Direct Support Professionals (DSPs) testified in a Washington, DC city council on local legislation to increase DSP wages. Esme Grewal, ANCOR Vice President of Government Relations, participated in the proceedings to support our DC members and share the national perspective.

As quoted in Street Sense:

“Grewal said it is not uncommon in the United States for direct support professionals to work more than one job to adequately support themselves.

The national annual turnover rate for direct support professionals is about 45 percent, according to a report submitted to President Trump on the direct support workforce crisis in the United States. Grewal said high turnover means that service providers are frequently working to replace staff and provide consistent care to their clients.


To read more on this story, click here: ANCOR Testifies with DC Advocates on City Bill for Higher DSP Wages

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Saturday, August 17, 2019

Disabled Man Leaves His Wheelchair And Risks His Life To Rescue Kitten Stuck In Drain



An act of kindness was captured in a video when a disabled man got out of his wheelchair in order to shuffle down a grass embankment in order to rescue a small kitten that was caught in a storm drain.

30-year-old Abu Fathiyyaturahma Menk Abdun Mujtahid first noticed the kitten struggling to hold onto the concrete barriers in Sabah, Malaysia, last Saturday morning.

Despite his inability to use his legs, Abu didn’t hesitate to get out of his wheelchair to get down to the stranded cat.

To read more on this story, click here: Disabled Man Leaves His Wheelchair And Risks His Life To Rescue Kitten Stuck In Drain


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Widow with Down Syndrome Shows the Power of Love After Husband's Death



Deep in New York's Adirondack Mountains, family and friends gathered to help 59-year-old Kris Scharoun-DeForge pay tribute to her remarkable husband. "He got me laughing and everything. He was the one for me," Kris said.

Kris and Paul met in 1988 and after dating for five years, they became one of the first couples in the world with Down syndrome to get married.

"I proposed to him," Kris said. "I whispered in his ear, 'Would you marry me?' And he looked up at me with this big beautiful smile and he shook his head 'Yes!' And that's when I knew."

But Kris' sister, Susan Scharoun, said it took a lot more than "yes" to get them to "I do." There were marriage classes, counseling sessions, and a whole lot of pushback from the supposedly able-minded people.

"Yea, there really was quite a bit of resistance. There was a feeling that it was like children getting married versus two very capable adults," Susan said.

To read more on this story, click here: Widow with Down Syndrome Shows the Power of Love After Husband's Death 


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Thursday, August 15, 2019

“It’s a Spectrum” Doesn’t Mean What You Think



Everyone knows that autism is a spectrum.  People bring it up all the time.

“My son is on the severe end of the autism spectrum.”

“We’re all a little autistic– it’s a spectrum.”

“I’m not autistic but I’m definitely ‘on the spectrum.'”

If only people knew what a spectrum is…  because they are talking about autism all wrong.

Let’s use the visible spectrum as an example.

As you can see, the various parts of the spectrum are noticeably different from each other.  Blue looks very different from red, but they are both on the visible light spectrum.

Red is not “more blue” than blue is.  Red is not “more spectrum” than blue is.

When people discuss colours, they don’t talk about how “far along” the spectrum a colour is.  They don’t say “my walls are on the high end of the spectrum” or “I look best in colours that are on the low end of the spectrum.”

To read more on this story, click here: “It’s a Spectrum” Doesn’t Mean What You Think


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Mumble Sauce: The Magnificent World of Toni Lane



She had a brain aneurysm and lived to paint the tale.

Mumble Sauce is a summer 2019 column about how DMV Black communities uplift healing and creativity in the face of gentrification, displacement, policing, and incarceration. This is installment four of 10.

Toni Lane says you can feel plants talking to you if you pay attention. 

Her houseplants had just finished cussing her out. The sprawling spider ivy and aloe had spent the day baking in the sunlight piercing the window of Lane’s studio apartment. The 65-year-old artist was busy making lino prints and hadn’t noticed they needed water.

Lane tells me this as we nurse our half-finished bottles of Beck’s in her home, which is also her art studio. Stacks of canvases fill each corner. One of the walls is a large bookshelf holding self-made publications going as far back as the 1980s.

To read more on this story, click here: Mumble Sauce: The Magnificent World of Toni Lane




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D.C. Council Calls on Mayor Muriel Bowser to Extend Disability Services Contract With Georgetown University



A letter signed by all 13 D.C. councilmembers asks Mayor Muriel Bowser to "reexamine" the Department of Disability Service's decision to end a 14-year relationship with Georgetown University for services for people with developmental disabilities.

The letter comes after public backlash to DDS's decision to not renew a $1.3 million contract with the university and instead provide some of those services within the agency and divide others up among other District contractors.

DDS did not meaningfully engage with advocates, legal professionals, or people with disabilities, those advocates say. They also criticize the agency for a "piecemeal" transition plan, which was released after Ward 1 Councilmember Brianne Nadeau scheduled a public roundtable.

To read more on this story, click here: D.C. Council Calls on Mayor Muriel Bowser to Extend Disability Services Contract With Georgetown University




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