This March marks the 28th anniversary of Developmental Disability Awareness Month. The National Association of Councils on Developmental Disabilities defines the goal of this annual campaign as “creating awareness about developmental disabilities, teaching the importance of inclusion within every aspect of life, and to sharing the stories of individuals with a disability to show that a successful life is possible”. The campaign focuses on education, employment, and community living for individuals with intellectual disabilities.
In honor of Developmental Disability Awareness Month, we are sharing stories of inclusion all around us. Here are some great examples of how our society is creating a more inclusive environment and bringing awareness to individuals with disabilities in our communities.
- Disabilities in television and film – popular television shows such as have featured people with disabilities increasingly in the past several years. Lauren Potter had a major role in Glee, Luke Zimmerman was cast in The Secret Life of the American Teenager, Jamie Brewer starred in two seasons of American Horror Story, and J. Mitte portrayed Walter White’s son in the wildly popular series Breaking Bad. Several new shows have been addressing disability issues and putting disabled characters at the center of the story, such as ABC’s Speechless, which features a high school student with cerebral palsy and Netflix’s Atypical, which tells the coming-of-age story about an 18-year-old with autism. For more information about this topic, check out the article TV Depictions of Disability Have Come a Long Way on Buzzfeed.
- Apple is introducing inclusive emojis! The technology company has been praised for inclusion when it comes to skin tone and sexual orientation – now the folks at Apple have submitted a proposal for new accessibility emoji that will include service dogs, people using both manual and mechanical wheelchairs, people using canes, an ear with a hearing aid, and prosthetics.
- Adaptive clothing is catching on – popular and affordable brands like Cat & Jack for Target have introduced sensory-friendly clothing for kids, and are adding to their line by creating clothes for kids with other disabilities as a part of their Design for All initiative. These pieces are designed with many different disabilities in mind – including wheelchairs, sensory concerns, and abdominal access for feeding tubes. Their sensory-friendly clothes are designed without itchy tags or seams and are constructed in soft cotton. Other online shops are also popping up, such as Smart Knit Kids, which offers seamless socks, underwear, and tees for kids with sensory processing disorders.
- Opportunities for postsecondary education – colleges and universities all over the country are offering programs and courses with intellectually disabled students in mind. The REACH Program at the University of Iowa welcomes students with learning disabilities, autism and other intellectual disabilities. This program offers a real college experience, with integrated housing, inclusive educational opportunities, employment training, and more. Landmark College in Vermont was created especially for students with dyslexia, hyperactivity, and other learning disabilities
- Adaptive fitness opportunities are becoming more widely available – adaptive gyms are popping up all over! Unified Health and Performance in Lancaster is offering an inclusive environment for fitness. People of all abilities are welcome at the gym and accommodations are made to create a great experience for everyone. The gym also offers several adaptive group classes per week for both kids and adults. For more information about their mission, check out the Worcester Business Journal feature article. This Washington Post article also has a lot of great information about fitness for people with disabilities, and features a personal trainer who has autism.
Over the past few months, Venture has been proud to welcome legislators from the communities we serve into our programs to share with them the valuable work we do and discuss some challenges and concerns the human services industry is facing, especially workforce recruitment and retention. Both independently as an agency and as a member of the Provider’s Council, Venture is advocating for direct care workers. We support legislation that will offer student loan repayment options and fair pay for similar work. We will also continue to advocate for affordable healthcare and higher wages. Our employees are the lifeline of the work we do every day, and we believe in investing in their wellbeing and professional development. Looking out for our workforce leads to better care for the individuals we support and creates a stronger community.
We discussed these issues and more with Senator Anne Gobi (D – Worcester, Hampden, Hampshire and Middlesex) when she visited our Community Day Program in Sturbridge; Senator Ryan Fattman (R – Worcester and Norfolk) and Representative Kevin Kuros (R – 8th Worcester) who both visited our Community Day Program in Uxbridge; Representative Natalie Higgins (D – 4th Worcester) and Senator Dean Tran (R – Worcester and Middlesex) when they visited our Community Day Program in Leominster; and Representative Jeffrey Roy (D – 10th Norfolk) when he met with us at our new residential program in Franklin. We would like to thank each of them for taking the time to hear our concerns and learn more about the vital work we do providing services to people in our community and providing jobs all over Massachusetts.
The Providers Council will be launching its new “Will You Care?” campaign at the 2018 Caring Force State House Rally on April 10th. For more information, visit The Caring Force.
by Mike Hyland, President & CEO
What trying times we live in now. It seems every newscast we watch leads off with a story about shootings or fires or guns or disasters or war. In fact, most of the time a newscast leads off with eight or nine of these stories and by the time we get to a commercial break it’s hard to sit up straight. It’s a shame, a real shame that newscasts and newspapers almost never lead off with something positive and uplifting. There are after all, plenty of good stories happening all around us every day.
I’d like to see a newscast lead off the nightly news with a story about the direct support professional who took an individual to her very first movie because a team of people helped her to manage the crippling anxiety that she has lived with for 20 years. Or the nurse who helped a terrified teenager give birth and then held the teenager’s hand and told her everything would be all right because she’s not alone. A story about the cop who encountered a man hearing voices but still managed to get him to safety and then checked on him two days later. That would be a great way to lead off a newscast too. I’d like to see a story about the foster parent who just helped her fifth foster child graduate high school in spite of overwhelmingly long odds and is now helping him get ready to attend college. Maybe a newscast could make the first story of the night a feature about the seven year old who is now cancer free after four surgeries and has already decided she wants to be a doctor. We just never see this stuff on the news but it happens all the time.
Wouldn’t it be nice to see a major newspaper make a block headline on the front page about the volunteer in the nursing home who comes in every day to dance with the Alzheimer’s patients because it helps them remember their weddings 50+ years ago? It would be wonderful to see three stories above the fold; one about the teacher who talked a kid out of quitting school, another about the counselor who single-handedly helped a man stay sober for the third day in a row, and a story about the librarian who delivers books on her own time to people in psychiatric hospitals. What a great thing it would be to see a whole front page dedicated to the little girl who comes home from school every day and leaves a letter in her neighbor’s mailbox so the neighbor’s autistic daughter who is afraid to leave the house can always have mail to open. It would be amazing to see a local newspaper do a series on the gentleman from Ghana who reaches into his own pocket every day to augment the food he delivers as a volunteer with authentic dishes from his country because he thinks the people he delivers to would like it. A story about the neighbor who started looking after the lonely 54 year old disabled woman because she has no one else but now does it because she likes her would surely be better than anything I saw on seven different front pages this morning.
People do things like this every day but we have to go looking to find out about it. Given the world we live in, it’s about time the people who deliver the news to the masses started making it easier for us to meet all these people.
By Mike Hyland, President and CEO
The end of the year tends to be a busy time. The holidays are upon us, there are seemingly endless tasks and errands, high school seniors are planning the next steps in their lives, and Old Man Winter makes his annual return. This is also the time of year when Congress tries to wrap up business. In 2017, that means tax reform, which we all know is an unfailingly complicated business. In addition, this year Congress will also take up the chore of confirming (or not) a new Secretary of Health and Human Services. With all due respect to the enormity of the work happening in Washington D.C., we should be careful to ensure we don’t leave people who need help, and those who provide that help, behind. In other words, let’s make sure we keep the promise.
It is most important that we remember that massive change has the potential to inflict unintended consequences on various groups. As such, our Congress has a responsibility to be sure that any legislation or action does not inadvertently harm people with disabilities or the professionals who work tirelessly to help them. The cost of providing quality services to people is not cheap, and it’s not supposed to be. An automobile with front and side airbags costs more than one with pillows stapled to the steering wheel because it’s safer for people, and that’s what provider agencies do: we keep people safe. Providing supports that allow people to live vibrant lives with dignity and choice is the minimum of what we should require as a society. And this is not just a responsibility at the national level either. Individual states must also ensure that we don’t lose the gains we’ve made over the years.
Massachusetts is one of a number of states now moving under the auspices of managed care entities the fiscal oversight responsibilities for many of the services provided to people with disabilities The goal of reducing redundancy through better coordination of care is appropriate and even admirable. That goal, however, is dwarfed by the responsibility to make sure that no one who currently receives community supports is forced to make do with less. We must take great care to guard against the pitfalls experienced in states such as Texas, where many severely disabled children have seen a horrifying reduction in vital services, or Kansas, where some families have been asked to sign blank treatment plans that ultimately called for drastic cuts to supports that keep loved ones in the community. Massachusetts has always been a compassionate leader in the provision of social services and that commitment must remain absolute in the face of any systemic changes that may take place
As politicians struggle with the need and pressure to reduce runaway costs in certain areas, they owe it to everyone who receives community based-supports to remember just what people with disabilities (and their families) were told to expect when such supports were moved out of institutions and into local communities. They were promised that people would be safe. That is a promise that needs to be kept. It’s everyone’s responsibility to see that it is.
For many children, Halloween is an exciting time of year. Choosing a costume, trick or treating, parties with friends, celebrations at school, and other autumn activities can be a lot of fun. But for children with autism or other sensory processing concerns, it can be stressful. Here are some helpful tips to make Halloween fun for everyone:
- Prepare your child by talking with them about what to expect when trick-or-treating. Show them a movie or read them a book where other children are trick-or-treating. You might even try using different rooms in your house to practice knocking on the door and saying “trick or treat”. You could also do a practice run at the home of a family member or friend.
- Lots of children with sensory concerns are very sensitive to different clothing items. Halloween costumes can be itchy, tight, awkward, or otherwise just plain uncomfortable! Have your child try on their costume and spend a couple hours wearing it around the house so they can get used to it. This will allow you time to make adjustments if necessary, like cutting off tags or layering over a more comfortable shirt. Click here for more about sensory-friendly costumes and be sure to check out Pinterest for lots of great ideas.
- Help your child identify which candies they like, and let them know about some types that can turn your mouth a different color, get stuck in your teeth, or be very sour.
- Pumpkin carving is a great Halloween tradition. For many kids, the sensory experience of playing with “pumpkin guts” can be really fun! However, others might not enjoy that sensation. There are other ways to incorporate jack-o-lanterns besides carving – kids can decorate pumpkins with paint or stickers instead. Click here for some great ideas that don’t include carving.
- If your child is going trick-or-treating and has trouble communicating, you can make a card that says something like, “Hello, my name is ______ and I have autism. I might have trouble saying ‘trick or treat’ or ‘Happy Halloween’ but I am trying my best. Thank you!” Your child could hand it to the person answering the door or you could attach it to their treat bucket. Click here for a printable card or create a customized one.
- Don’t feel pressured to participate in trick-or-treating (or any other activities for that matter) if they don’t work for your child. It’s not for everyone, and that’s okay. You might have just as much fun staying in for movie night!
Venture will also be hosting its first Sensory-Friendly Not-So-Spooky Halloween Event on Thursday, October 26th from 4 – 6 pm at our Community Day Services Program, 670 Douglas Street, Uxbridge, Mass. The event is free and focused for children 12 and under with autism and other sensory concerns. Event volunteers will include clinicians and direct care staff with experience working with people with special needs. Activities will include practice trick or treating, scavenger hunt for prizes, activities, games, crafts, snacks, and access to our sensory room for a quiet space if needed. Please RSVP with number of people attending to firstname.lastname@example.org.
This week has been designated as National Direct Support Professional Recognition Week, and we would like to take a moment to recognize the dedication of our agency’s Direct Support Professionals. DSPs are highly-trained, compassionate professionals who provide a vital contribution to their communities – supporting those who need assistance with essential daily needs. The work they do allows our society’s most vulnerable members to live safe, fulfilling lives while being part of a community of their choice.
Direct Service Professionals support individuals with some of their most basic daily needs, such as preparation of meals, helping with medications, bathing, dressing, and transportation. DSPs encourage meaningful community integration, help individuals maintain relationships with family and friends, and help identify recreational interests. These staff members are not only daily caregivers – they assist with communication, medical care, and more. At Venture, Direct Support Professionals are the lifeline of our agency, and we honor the work they do every day.
For more information about Direct Support Professionals Week nationwide, please visit ANCOR’s National Advocacy Campaign website. For more information about local celebrations of Direct Support Professionals, check out The Caring Force.
The following article was written by Andrew with help from the manager of his program. Andrew lives in a Venture residence in Worcester County and wanted to share his experience with using assistive technology.
Every day, I rely on assistive technology. I use an overhead barrier-free lift system to get out of bed in the morning. I then use my customized wheelchair to successfully complete my morning routines before leaving for work. To get to work, I ride in a customized van. The van lifts me off the ground and into the van with staff assistance. When I was younger, all of these things – getting out of bed, getting into my wheelchair, and getting into any mode of transportation – were done by people lifting me. When people lift you, it can be really scary and sometimes I was injured. I have not gotten injured since I started using mechanical lifts and I feel much more comfortable.
In April 2017, I wanted to begin doing some races, but wasn’t sure I would be able to. However, I did not realize that specialized running wheelchairs are available. The first time I saw the running chair, I was a bit nervous. I thought, “It doesn’t look like any other chair I have ever used.” It only has three wheels – two in the back and one in the front.
I was very lucky to meet the team of individuals who designed and built these running chairs, and they explained aerodynamics to me. Until that moment, I had never realized the importance of science in assistive technology.
When I participate in races with the assistance of Team Hoyt New England runners, I am sitting in an aerodynamically correct position for both my physical needs and for the person who is pushing me – amazing! Later this summer, I will be learning to sail on a sailboat that has been fitted with assistive lifts to get in and out of the boat, and a rudder that has been adapted for me to use. I can’t wait… And I am no longer scared of trying any new assistive technology!
Assistive Technology can best be described as a variety of items which can help an individual work around functional limitations imposed by a disability. Some of these items include wheelchairs with adaptive trays to hold a person’s iPad, a brace for a person to be able to hold an eating utensil, a built-up handle of a spoon, or a communication device. These items are essential to improving the quality of life and level of independence for people with disabilities. Other examples of such equipment might be lifts, swings, tricycles, tablets, computer software, shower chairs, specialty writing utensils and so much more. These items can help individuals with mobility, communication, sensory, recreational, or social needs.
With the increasing specialized needs of the individuals we support, Venture has developed an Assistive Technology Committee to help effectively meet these needs. Key employees have been attending conferences and trainings to learn how to develop a program that will help assist individuals access the resources available. Currently, the committee is in the process of conducting assessments to determine what equipment would be most helpful to the individuals in our programs.
In keeping with our mission to enrich the lives of those we serve, we are very proud to announce our partnership with Tantasqua Regional Vocational High School in their commitment to assist people in their community by creating individualized and innovative assistive technology. This fall, we will be working with Ray Rousseau from the Manufacturing Department and Bruce Tranter from the Computer Technology Department to assist us in developing creative approaches. We are looking forward to teaming up to expand our services and we are thankful to the many students who will be dedicated to helping with these projects. Stay tuned for updates!
This summer, there are many sensory-friendly summer activities for individuals with autism and sensory processing disorders available throughout the community. Thankfully, many organizations and community groups have developed a greater awareness about the needs of this population, providing families of children with disabilities the same opportunities as everyone else. We applaud the efforts of local vendors and organizations that are working to meet the needs of everyone, regardless of disability.
Here is a list of events and activities throughout Massachusetts that are sensory-friendly fun for the whole family:
Sensory Sensitive Saturday in Boston on July 22 – tours and programs at the Edward M. Kennedy Institute
Sensory-Friendly Movie on July 29 – showing of “The Emoji” in Haverhill
Family Autism Event on August 5 – The Children’s Museum in Easton
“A Little Princess” Sensory Friendly Performance on July 22 – community theater program in Brockton
Especially for Me: Autism-Friendly Evening on August 19 – Children’s Discovery Museum in Acton
Sensory Sensitive Sundays – Chuck E. Cheese’s in Worcester and other Massachusetts locations
Sensory Friendly Saturdays – Altitude Trampoline Park in Billerica
Morgan’s Wonderland, the country’s most accessible theme park, has opened the world’s first inclusive water park. Morgan’s Inspiration Island offers the excitement and fun of a water park to children and adults of all abilities, and offers complimentary waterproof wheelchairs (including air-powered power wheelchairs), warm-water splash pad, beautiful interactive water playgrounds, cabanas for relaxing, and a river boat ride. Spacious accessible changing rooms, reasonable ticket prices, sensory-friendly environments, and handicapped-accessible everything make this water park an incredible experience for everyone – especially those who haven’t had the opportunity to enjoy an amusement park due to physical disabilities, developmental disabilities, ambulation difficulties, or medical conditions. Admission for those with disabilities is free of charge. This park has truly thought of everything!
The park’s creator, Gordon Hartman, is a philanthropist who created the amusement park and water park after being inspired by his daughter Morgan, who has developmental disabilities. In addition to funding the parks, the Gordon Hartman Family Foundation offers grants to organizations that help people with special needs. Let’s hope that others around the country take the lead of Morgan’s Wonderland and make recreational opportunities available for everyone!
For more information, check out their video.