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As you probably know Summer officially ends Friday, September 22. You can always tell when the Fall is sneaking in; school has started, the kids start talking about what they want to be for Halloween, and Dunkin' has pumpkin EVERYTHING! If you enjoy all the seasons in Rhode Island, you are not alone. The Fall has wonderful colors and a crispness that makes you want to eat apple cider donuts. In October, it is a time for scary movies, telling ghost stories, pumpkin carving, and so much more!
October also is a month full of awareness topics. ADHD, Down syndrome, Dyslexia, Sign Languages, and Learning Disabilities, to name a few. It is also the month for Disability Employment Awareness. This is among the topics we discuss often. We have a desire to help everyone live full and inclusive lives, the Buidling Inclusive Futures Program is one way we do this. In this edition we are highlighting Disability Employment Awareness. Read the personal story from one of our moms who is currently trying to navigate her son's job search. Additionally, we are introducing a new team member to The Arc Rhode Island and the Buidling Inclusive Futures Program! Read her introduction to learn more about Jessica Dos Santos. Thank you for supporting us and the work we do. We hope you enjoy everything Fall has to offer!
- The Arc Rhode Island Staff
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Special Note
The Arc Rhode Island
Goes Virtual
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On the 1st of October our office will officially be a 100% virtual workplace! We have been operating virtually for several months. All our programs and services will remain without any interruptions or changes. Our telephone number, email, website and social media will also remain the same. The Arc RI website will have detailed contact information for each team member on the "About Us" page, coming soon!
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International Day of Sign Language
September 23rd
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CLICK PLAY!
This 45-minute video tells the history of sign language and an interesting fact about Chilmark on Martha's Vineyard!
Want to find out more?
International Day of Sign Languages
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FREE
Outdoor Festival
Celebrating
Rhode Island Accessibility
The Steel Yard
27 Sims Ave Providence
Saturday
September 23rd
11:00am - 5:00 pm
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Building Inclusive Futures |
Building Inclusive Futures is a program that guides individuals with disabilities who are transitioning into adulthood. Individuals, with their loved ones, can discover their skills and explore further education or employment opportunities, and more! Together, The Arc Rhode Island, the participants, their families, and loved ones find themselves a source of extraordinary support to building their inclusive futures!
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Watch the BIF Podcast!
Hosted by RAMP's CEO Tina Guenette Pedersen every Wednesday night at 7:00 PM
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Contact Us For More Program Information
The Arc of Rhode Island, in partnership with United Cerebral Palsy of Rhode Island, is funded by The Behavioral Healthcare Developmental Disabilities and Hospitals (BHDDH)
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Introducing...
Jessica Dos Santos
Life Coach for the
Building Inclusive Futures Program
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Known for her exceptional ability to build strong and genuine connections, Jessica has a natural ability for understanding her clients' needs, aspirations, and fears, creating a safe and non-judgmental space for them to explore their desires and work towards achieving them. Her warm and compassionate approach, combined with her extensive knowledge of various coaching techniques, enables her clients to gain clarity, harness their strengths, and overcome self-limiting beliefs.
"true transformation
comes from within"
~ Jessica Dos Santos
Jessica believes that true transformation comes from within, and she is dedicated to empowering her clients to uncover their inner potential and maximize their personal growth. Through a combination of active listening, thoughtful questioning, and practical strategies, she helps clients identify their values, leverage their strengths, and break through the barriers that hinder their progress.
With a passion for personal growth and empowering individuals to reach their full potential, Jessica Dos Santos has dedicated her career to guiding and supporting clients as they navigate their unique life paths. With an extensive background in life coaching and a strong reputation for her empathetic and results-driven approach, Jessica is joining our organization to continue making a positive impact on the lives of others.
Jessica holds a bachelor’s degree in psychology and has over 7 years of experience in the field. Throughout her career, she has worked with individuals from diverse backgrounds, helping them overcome obstacles, set meaningful goals, and take tangible steps toward creating the life they truly desire. She has successfully assisted clients in various areas, including career development, relationship building, stress management, and personal fulfillment. Her clients appreciate her ability to provide effective guidance while also encouraging self-reflection and independence, empowering them to develop long-lasting skills that extend beyond the coaching sessions.
As Jessica joins our organization, she brings a wealth of experience and a commitment to helping individuals create purposeful and fulfilling lives. She is excited to continue making a positive impact, supporting others on their journeys of self-discovery, growth, and achievement.
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October Awareness Links...
Learn More, Educate Others!
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National Disability Employment Awareness Month (NDEAM) |
Observed each October, National Disability Employment Awareness Month (NDEAM) celebrates the contributions of America’s workers with disabilities past and present and showcases supportive, inclusive employment policies and practices that benefit employers and employees. ODEP has chosen "Advancing Access and Equity" as its theme for NDEAM 2023. NDEAM en español.
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Disability Mentoring Day (DMD) is a large-scale national effort coordinated by AAPD to promote career development for students and job-seekers with disabilities through career exploration and ongoing mentoring relationships. DMD produces life changing results for mentees, connecting them to full time employment and internship opportunities.
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Richard in Cap & Gown on Graduation Day. |
Like all forms of autism, PDD-NOS can occur in conjunction with a wide spectrum of intellectual ability. Its defining features are significant challenges in social and language development. If you are a parent of a child with special needs let's face it, your internal struggle is real.
What we want for our child is a job that he likes and makes him happy. I know that there are many parents out there that feel the same way we do, and I am glad that there are organizations like The Arc Rhode Island. They have programs like Building Inclusive Futures and other resources that will help assist people with IDD to find jobs that will suit them.
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Job Searching With IDD
Story by: A Concerned Mom
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Richard is a recent college graduate, with a Bachelor of Arts and has Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). He is on the Spectrum and his struggle is real, not only for Richard but also his parents.
As his mom I think about his struggle to gain full time employment. He has a bachelor’s degree in history but what can he do with his degree? His dad and I help him look for jobs almost every day. His dad helped him write a cover letter and resume as well as apply for several jobs.
I often think about what job he can do, what career path will be a good fit. Once he is hired, how will he interact with his coworkers? Richard will find a job eventually but until he does his dad and I continue to support him, teach him life skills, and ensure that he has all the necessary tools to support his journey towards a successful career.
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Employment, Training, and Wages |
Why It Matters
People with IDD can be employed in the community alongside people without disabilities and earn competitive wages. But too many barriers exist that lead to people with IDD being unemployed or underemployed, hindering the opportunity for financial stability. Currently, people often leave school with little to no community-based vocational experience or planning for transitioning from school to work. Many have been placed in “prevocational” programs and “disability-only” workshops where they are paid below minimum wage and have little expectation of moving into competitive jobs where they can work alongside people without disabilities. These low expectations foster job discrimination.
When employed, few people have opportunities to advance, explore new possibilities, or, in their later years, retire. Unrealistically low limits on assets and earnings make people fear losing vital public benefits if they work too many hours or earn too much. Lack of other services — like transportation or of accommodations like assistive technology — can also hinder success.
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To read more about the:
Issues
The Arc's Position
Best Practices
School-to-Work Transition
Training of Staff & People w/ IDD
Systems
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Looking for Autism Friendly Fun in Rhode Island?
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Love to Dance?
Proud To Be Me
If you would like to sign your child up for our dance and movement therapy classes, please fill out the form below and we will be in contact with you as soon as possible. Our free classes take place through Zoom on Thursday from 7:00-7:30 EST and Saturdays from 5:30-6:00 p.m. EST (other time zones listed on our website). If you have any other questions or concerns, feel free to contact us via our email (autismdancetherapy@gmail.com) or our website: https://sites.google.com/view/ptbmdance-and-movement-therapy/home
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Visit our booth for some Fall Fun! |
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DSSRI BUDDY WALK®
and Fall Harvest Festival
Sunday, October 1, 2023
10:00 am
1095 Ives Road
Warwick, Rhode Island 02818
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Sensory-Friendly Nights at Roger Willaims Zoo
Join us for a special sensory-friendly Jack-O-Lantern Spectacular an hour before the trail opens to the public: designed those with Autism Spectrum Disorders (ASD) and sensory processing differences and their families!
For maximum enjoyment, the over 5000 pumpkins will light up the Zoo’s Wetlands Trail, but there will be no music or special effects.
Tickets for the Sensory-Friendly nights are for sale at the Zoo's Admissions both ONLY.
All other tickets are for purchase on-line.
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Dates: Monday, October 23 & Tuesday, October 24
Time: 5:00 – 6:00 pm
Pricing: Sensory-Friendly Tickets are available for purchase in person ONLY at the Zoo’s admissions booth. Ticket prices are $16 for adults; $13 for children (ages 2-12); toddlers 1 and under are always free.
Roger Williams Park Zoo members save $2 off adult and $1 off child tickets.
Members must present a current Roger Williams Park Zoo membership card and another form of matching photo I.D.
Please note: Jack-O-Lantern Spectacular is open rain or shine. In the case of light to moderate rain, the show will be open.
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AmpSurf is hosting a Learn to Surf Clinic for people living with disabilities, Veterans and First Responders on September 23rd in Westerly. Spaces are filling up quickly!
All people living with a disability or lifelong condition are invited to participate.
They need Instructors, Water assist, Beach support, Booth help and more. AmpSurf’s mission is to Promote, Inspire, Educate, and Rehabilitate (PIER™) all people with disabilities and their families through adaptive surfing and other outdoor activities to keep them focused on their abilities, not their disabilities.
Use the link to find out more and register.
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AMPSURF NE Learn to Surf Clinic
When: Saturday, September 23
Time: 7am - 12pm EDT
Where: Fenway Beach, Westerly, RI
A beach day sharing the healing power of Adaptive Surf Therapy with those living with disabilities, Veterans and first responders.
Surf's Up!
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Join us and hear David's expertise on IEP Meeting Tactics for Parents
October 9th at 6:30 PM
Registration is required.
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Zoom Webinar with
Senior Advocate
Cirkiel Law Group
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To help students find their appropriate buses, RIPTA staff will distribute bilingual informational flyers specific to each school. These informational flyers, as well as instructional videos, are available at RIPTA.com/PVDschools.
Students are encouraged to download Transit app to track their trip in real-time.
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Look for RIPTA’s yellow vest staff. |
RIPTA outreach staff, in bright yellow vests, will be in Kennedy Plaza in the morning starting at 7am and at select Providence high schools in the afternoon, helping students navigate the bus system.
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Feds Warn Medicaid Programs Against Wrongly Dropping Beneficiaries |
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Renee Hanania, right, kisses her son, Branden Petro, who has been diagnosed with mitochondrial disease. The family was told that he was no longer eligible for Medicaid, meaning they would lose the services of licensed practical nurse Pamela Mason, left. (Jefferee Woo/Tampa Bay Times/TNS)
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Research Study Opportunities |
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If interested, please fill out our contact form: tinyurl.com/s2slab or contact: Dr. Jill Hoover, Sounds2Syntax Lab Director Speech, Language, and Hearing Sciences, UMass Amherst (413) 461-0875 | s2slab@comdis.umass.edu
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Massachusetts General Hospital |
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Zoom Meeting 8/24/23 @ 12 PM
Depression and Down syndrome:
What are the symptoms?
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The Massachusetts General Hospital at the Lurie Center is recruiting for a new research study that will evaluate the effectiveness and safety of the drug fluoxetine for the treatment of depression in adults with Down syndrome.
Residents of Rhode Island are eligible.
Participants must be:
- 18 to 45 years of age
- diagnosed with Down syndrome
- have symptoms of depression
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October National Awareness for both:
Depression and Down syndrome
Check out the websites for more information
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Depression and Down syndrome Study
Learn more about the research study at the Lurie Center
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Robyn Thom, MD
Psychiatrist, Lurie Center for Autism
Co-Director, MGH Williams Syndrome Program
Assistant Professor, Harvard Medical School
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Interviewer: So, the first question I have for you regarding your study Fluoxetine treatment of depression in adults with Down, is why did you want to do this study? Why did you think it was important to do?
Dr. Thom: The reason we started this study is because we were noticing that there were a number of young adults with Down syndrome who were getting depressed. And there's almost nothing in the scientific literature to guide us in terms of what medications can be helpful and safe.
Interviewer: What has surprised you so far while conducting the study?
Dr. Thom: Yeah, I mean, I think you always go into a study not necessarily knowing what to expect – which is why we do research! I think a really pleasant surprise is how well the drug has worked in a number of our participants. And it's just been so meaningful to see how much a little bit of fluoxetine can change a person's life.
Interviewer: What have you learned so far while conducting this study?
Dr. Thom: It’s too early to draw any conclusions since we want to be unbiased and methodical when reviewing and reporting our results. So far, I think we can only say what we have learned anecdotally from the handful of people who participated and say that in some people it may really make a positive difference.
Interviewer: What impact have you seen in the current participants?
Dr. Thom: Again, we want to be careful about not drawing conclusions prematurely, but in some of the people we've treated so far, we've seen almost complete reversal of symptoms of depression. We've seen patients go from being nearly nonverbal, which can be a symptom of depression in adults with Down syndrome, to regaining expressive language. This is huge.
Other symptoms that we've seen change with Fluoxetine or Prozac are the ability to enjoy things and interest in doing things. Many of the patients we've treated when they've been depressed have not been able to experience pleasure from anything aside from maybe food. They've given up all their hobbies, and their self-care. Their willingness to go through with self-care routines, like brushing teeth, washing hair, and taking showers is minimal and it’s been nice to see some participants getting to the point where they're starting to initiate these tasks themselves and be able to experience joy again. The other big one that we've seen is oftentimes adults with Down syndrome become quite socially withdrawn and isolated when they're depressed. It's just been so lovely to see return of that previously social and friendly personality in some of the participants.
Interviewer: What have you seen in terms of reactions from caregivers?
Dr. Thom: The majority of caregivers have just been over the moon with the results we've had in this study. Some have expressed regret that the depression had gone on for so long before it was treated.
Interviewer: What questions do you still have about depression and Down syndrome from doing the study?
Dr. Thom: I think we still are in a position where we have many more questions than answers. I think that we still don't know for sure how depression can affect a person with Down syndrome. We still don't know of the several antidepressant medications available which one is best or what the long-term side effects may be. I think we're fortunate to start to be gathering data indicating that Fluoxetine helps at least some people with Down syndrome. But really, these are still very early days in learning how to best diagnose and treat depression in these patients.
Interviewer: Why do we often see depression around transition age for adults with down syndrome?
Dr. Thom: Great question which probably has a complex and multifactorial answer. I think one reason is, that for any of us, a big risk factor for depression is encountering a big life stress or change. The time of transition is state dependent but it's usually about at age 21 or 22 years when young adults age out of the school system. The school system is where people with special needs get the majority of not only their education, but also therapies, support, and community. To go from having 30-40 hours of support per week to 0, which is often the case, is a massive change and stressor that no matter how well you try and prepare for is incredibly difficult for so many adults with special needs. I'm also curious, is there something biologic about it? In the general population, we know that for young pre-pubertal children, it's unusual for them to get depressed, but more common in certain stages of life like after puberty, also for women the peripartum period or perimenopausal period. So, there may be biologic or hormonal types of factors that we just don't know yet about in Down syndrome that make young adulthood a vulnerable time for depression.
Interviewer: How do you separate depression symptoms from other common comorbidities like anxiety or dementia?
Dr. Thom: That's a really great question. And I'll be honest, sometimes it's difficult to do. One of the things that makes it difficult is that at this point there really are no validated tools like established diagnostic criteria, questionnaires or rating scales for people with Down syndrome.
We know that the typical criteria we use in the neurotypical population often doesn't apply too well. But we have a couple of tricks up our sleeves that we can use. The first is thinking about the timing of onset of symptoms. So, as we've been talking about, we've learned clinically that young adulthood is a common time for depression to start, whereas anxiety more classically, not always, but classically begins earlier in life, like in childhood or the teenage years. Dementia, even in people with Down syndrome does not typically occur in the twenties - it happens a couple of decades later, so timing is a big one. And then the other one is really trying to look for a clear and episodic sustained change in mood. What that often looks like in people with Down syndrome is in some ways similar to what we see in people without Down syndrome. So, changes in mood, like crying, looking sad, becoming more easily upset, not wanting to do things they normally do, having less energy, changes in appetite, and changes in sleep. And then looking out for a few of those other symptoms that we've mentioned that are probably a bit more unique to Down syndrome, like loss of language, profound social isolation, anger or irritability, and the decreased attention to self-care routines.
Interviewer: Thank you so much for answering those questions for us.
Dr. Thom: My pleasure, thank you.
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