vody/> RCM - Revitalizing Community Membership: Empowering Independence: 2019

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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Thursday, August 1, 2019

Feds Earmark $150M For Disability Housing Assistance



Hopefully DC can get in on this, if anyone has any leads, please let us know! We need to partner to address affordable and accessible housing in DC!

Federal officials say they plan to dole out millions of dollars to help thousands of people with disabilities access housing in the community.

The U.S. Department of Housing and Urban Development is offering up $150 million in grants that they say will help some 18,000 people with disabilities ages 18 up to 62 across the country.

“Making sure people with disabilities have a decent, safe, and affordable place to call home is essential,” said HUD Secretary Ben Carson. “This funding will help our local partners ensure residents with disabilities have the opportunity to fully enjoy their home while living independently.”

Public housing agencies can apply for the grants to assist people with disabilities in their areas now through Sept. 5. HUD said it plans to award 300 grants ranging from $20,000 to $3 million.

As part of the federal Mainstream Housing Choice Voucher Program, public housing agencies seeking the funding are encouraged to partner with health and human services organizations that can offer supports to people with disabilities who take part, federal housing officials said.

To read more on this story, click here: Feds Earmark $150M For Disability Housing Assistance


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Surge In Voters With Disabilities May Influence 2020 Election



Let's make sure everyone is registered and getting out to vote! #CripTheVote

Significantly more people with disabilities cast ballots last year, according to a new report suggesting that this demographic is poised to have a big impact in the 2020 presidential race.

About half of all citizens with disabilities voted in the 2018 midterm elections, up 8.5 percentage points from the 40.8 percent who did so during the 2014 midterms.

Those are the findings from a report out this month from Rutgers University analyzing data from the government’s Current Population Survey Voting Supplement.

In 2018, 14.3 million people with disabilities cast ballots, more than the 11.7 million Latino voters that year and nearly as many as the 15.2 million African-American voters.

To read more on this story, click here: Surge In Voters With Disabilities May Influence 2020 Election


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People With Disabilities Want To Help Make Over The Travel Industry



The largest minority in the United States is people with disabilities.

Gone on a trip lately? I did—last week. That’s when I realized that the travel industry is in what you might call the mullet stage of their accessibility makeover. That’s right—stuck in the 80s. Transportation in general—airlines, buses, subway systems, ride shares and railways—seem to need the most work. On the positive side, large attractions and destinations that serve families, as well as hotels that cater to big businesses, seem to be the pacesetters. How have they gotten ahead while other venues lag so far behind? Mostly by making simple changes.

Equipping staff with a new set of skills, for example, autism training, is playing a big role. Technology upgrades are also important. Many conference and performance centers are now making it standard for meeting rooms to be equipped with a screen for captions and wired with a hearing loop. This helps people who use hearing aids to listen to lectures and performances with greater clarity.

To read more on this story, click here: People With Disabilities Want To Help Make Over The Travel Industry


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Quality Trust Celebrates the Graduation of the Leadership, Mentoring and Negotiation Training Project



On July 20, 2019. Quality Trust celebrated the graduation of the Leadership, Mentoring and Negotiation training project they have facilitated the past three months. The advanced leadership training on the three topics was held for Advocacy Partners graduates and sponsored by the DC Developmental Disabilities Council. Congratulations to Robert, Bernard, Rossene, Nahyo, Caren, Germaine, Angelique, and Leonard. We know you will continue to lead and make a difference for your peers and community.

Congratulations to Robert and Bernard Crawford and all others for continuing your leadership training. You all will continue to be champion advocates here in DC!







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House Passes Autism Act



Keeping funding in place and increasing self advocacy voices!

Federal legislation allocating over $1.8 billion in government spending on autism efforts is one step closer to being approved.

The U.S. House of Representatives passed the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act, by a voice vote Wednesday.

The legislation, H.R. 1058, would renew a federal law that originated in 2006 and ensures support for research, prevalence tracking, screening, professional training and other government activities related to autism.

As it stands, the current version of the Autism CARES Act is set to expire at the end of September, meaning that without action from Congress, programs established through the act will come to a halt.

To read more on this story, click here: House Passes Autism Act


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A Day In The Life



So true! Watch this, you will have a chuckle!


This film takes a fun look at some of the interactions that people with intellectual and developmental disabilities experience in the community. We hope you enjoy the film and please feel free to share.

Learn more about Open Future: https://www.openfuturelearning.org




Open Future, Adult Special Needs, Amy Brooks, Danielle Darby, Intellectual Disabilities, RCM of Washington, Susan Brooks,

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Tuesday, July 16, 2019

‘We Are Worried’: Those Who Work With Disabled D.C. Residents Fear A City Cut Will Hurt Those Who Need Help Most



For a moment, imagine that you couldn’t talk and were in pain.

Imagine that pain grew so intense that you ended up in a hospital, but because of a disability you couldn’t tell anyone whether your feet or your chest or your whole body ached.

Imagine you had a doctor who wanted to get you healthy and home but wasn’t quite sure what healthy looked like for you and whether your home was equipped to handle your needs.

Right now, as the result of a long-standing partnership between the D.C. government and Georgetown University, a physician who understands intellectual and developmental disabilities would show up and speak on your behalf. A nurse, trained in those same areas, would then work to get you home as soon as you were well enough. Once home, you would receive another visit to make sure that you were okay and that your caretaker understood your needs.

These are some of the services Georgetown University provides through its DDA Health Initiative. These are also some of the services that — unless something is done soon — will disappear on Aug. 31, because the D.C. Department on Disability Services (DDS) has decided not to renew Georgetown’s contract.

The decision was made quietly and has unnerved those who work closest with the city’s most vulnerable residents.

They fear that it will hurt men and women who have intellectual and developmental disabilities and set the city agency in charge of serving that population back on all the progress it made under 40 years of court supervision.

[After 40 years, U.S. court ends supervision of D.C.’s care for mentally disabled citizens]

“We are worried,” said Precious Myers-Brown, the local director of St. John’s Community Services, one of the oldest organizations to serve people with disabilities in the District. “My concern is for the people we support and how easily they can get lost in the system.”

To read more on this story, click here: ‘We Are Worried’: Those Who Work With Disabled D.C. Residents Fear A City Cut Will Hurt Those Who Need Help Most



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Monday, July 15, 2019

Surviving Education Trauma: Teacher Abuse of Disabled Students



Unfortunately this is the story of many people with disabilities. Time to break the silence.

Content Warning: discussion of abuse (mainly emotional abuse)

By Eryn Star, NCIL Summer Policy Intern

In Spring 2018, the first known survey on the prevalence of k-12 teachers abusing students (all kinds of students, not just disabled) was released. It was an online survey from Northern Michigan University directed at a little over 1,000 teachers who were asked about the kinds of abusive behavior they have observed from the teachers around them. The results are important for everyone to see and validate what many education trauma survivors have been saying for years.

When asked how often they have seen teachers yelling at a student and embarrassing them publicly, most of the teachers responded 1-2 times with some responding 3-4 times or even 10 or more times. Never seeing those acts from teachers was rare. When the teachers were asked how many teachers in their school emotionally abuse students, only 14% said none. Furthermore, one in five teachers said that more than 10% of the teachers in their schools regularly target students. As much as we want to believe that educators would never do this to children and teens, teacher abuse of students happens much more often than society is ready to acknowledge and address. What resonated with me and confirmed what I’ve suspected for a long time is that the students targeted most by teachers were those with cognitive impairments with “other” a close second. When “other” respondents were asked to expand on who they witnessed being targeted, 1/3 said students of color, queer students, and English language learners. As an autistic queer student, it reminds me of my own experiences with education trauma.

To read more on this story, click here: Surviving Education Trauma: Teacher Abuse of Disabled Students


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Tuesday, July 2, 2019

7 Cool Aspects of Autistic Culture



When you are autistic, you spend much of your life feeling very alone.

No one can understand why you are melting down because someone bought Old Dutch brand chips instead of Ruffles.  People get impatient with you when you refuse to touch your shoelaces to tie them.

No one else in the room seems to be bothered by the two clocks ticking out of sync with each other.  No one else you know cares about cats quite as much as you do.  Everyone says you are wrong.  Things aren’t the way you interpret them.  Your feelings are ridiculous.  Your priorities are incomprehensible to people.

“Stop it,” “get over it,” and “why can’t you…”  are refrains that will follow you your whole life.

To read more on this story, click here: 7 Cool Aspects of Autistic Culture



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ABLE Accounts Slow To Catch On



We need to provide more guidance and education on the benefits of an ABLE Account!

New data is prompting questions about the sustainability of a recently-established program that allows people with disabilities to save money without jeopardizing their government benefits.

Far fewer people have opened ABLE accounts than are needed to ensure the viability of the program, according to an analysis from the National Association of State Treasurers, a group representing state officials who run ABLE programs.

Created under a 2014 federal law, ABLE accounts enable people with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much money is in the accounts.

To read more on this story, click here: ABLE Accounts Slow To Catch On



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Lawmakers Look To Jump-Start Employment For Transition-Age Youth



With a bipartisan proposal, members of Congress are pushing a new plan to increase competitive, integrated employment for young people with developmental disabilities.

A bill introduced in the U.S. House of Representatives this month would establish a demonstration program aimed at improving the transition from school to work.

The legislation known as the Customized Approaches to Providing and Building Independent Lives of Inclusion for Transition-aged Youth, or CAPABILITY, Act, H.R.3070, would establish six grants to states to support pre-employment transition services for young people with intellectual and developmental disabilities, including autism.

To read more on this story, click here: Lawmakers Look To Jump-Start Employment For Transition-Age Youth





tags

Autism, Adult Special Needs, Amy Brooks, Danielle Darby, Intellectual Disabilities, RCM of Washington, Susan Brooks, 


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The Complexity of Choice



Balancing Choice

Connie Lyle-O’Brien and John O'Brien explore the complexity of choice for people with developmental disabilities in the absence of a breadth of experience, and a strong network of relationships.





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Ali Stroker Makes History As First Wheelchair User To Win Tony Award



“For every kid at home watching with a disability waiting to be represented. . . You are!”

Ali Stroker made history at the 73rd annual Tony Awards on Sunday night in a major milestone for representation on stage.

The “Glee Project” alum took home the award for Best Performance by an Actress in a Featured Role in a Musical for her performance as Ado Annie in the critically acclaimed “Oklahoma!” revival.

Stroker is the first wheelchair user to ever win or even be nominated for a Tony Award.

“This award is for every kid who is watching tonight who has a disability, who has a limitation, who has a challenge, who has been waiting to see themselves represented in this arena. You are,” the actress said on stage to major applause from the audience.

To read more on this story, click here: Ali Stroker Makes History As First Wheelchair User To Win Tony Award


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Tuesday, June 11, 2019

Man With Down Syndrome, Recognized for Working At Same McDonald's For 27 Years Dies



Chris Campbell, who worked at a McDonald's on Buford Highway, passed away on Tuesday morning.

NORCROSS, Ga. — In a follow-up to a story of ours that literally touched millions across the nation, Chris Campbell, the man with Down Syndrome who was recently honored for working at the same McDonald's for 27 years, has passed away.

Family members confirmed to 11Alive that Chris passed away suddenly on Tuesday morning.

In March, the Down Syndrome Association of Atlanta, along with his coworkers honored Chris with a cake, a party and a trophy for being the restaurant's "golden star."

RELATED: Man with Down Syndrome honored for working at same McDonald's for 27 years

“He’s got determination, a lot of fight, and he’s going to the top no matter what… and no one’s going to stop him!” Chris’s mother said at the time.

To read more on this story, click here: Man With Down Syndrome, Recognized for Working At Same McDonald's For 27 Years Dies


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Saturday, June 8, 2019

Look Who We Ran Into At The Potomac Avenue Market!



Yesterday Carolyn and Mr. Burke enjoyed some celebrity status with members of Fox 5, Good Day DC at the Potomac Avenue Market. Watch the news!










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Support Better Pay for Direct Support Professionals



Please join in our advocacy. Grass roots efforts do make a difference. If you believe in this cause make sure your voice is heard!

Date: Thursday, June 13, 2019 

Time: 10 AM – 1 PM

Location: 
John A. Wilson Building
1350 Pennsylvania Ave NW
Washington, DC 20004

Join us at the Wilson Building in room 412 as we testify before the DC Council for a better pay rate and the opportunity for advancement for Direct Support Professionals. Direct Support Professionals are invaluable to the autism community so let’s fill the room with support and show how valued our DSPs are to us.

B22-1035 - Direct Support Professionals Payment Rate Act provides for an annual payment to certain providers of direct supports to persons with developmental disabilities. Direct support professionals are employees of a service provider that provides direct treatment or services to persons with developmental disabilities for at least 50% of their work hours.


To view on Facebook, click here: Support Better Pay for Direct Support Professionals

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