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.
By Mike Hyland, President and CEO
With the year half over already, the U.S. Senate is working furiously to pass a bill that overhauls the Affordable Care Act before Congress recesses for the July 4th holiday. A bill written in complete secrecy by just 13 members of the 100-member Senate is finally making its way to all of the people who will ultimately vote on it next week and, like the bill passed by the House of Representatives last month, the details are alarming.
Of paramount concern is the Senate’s plan to mirror the bill passed by the House that significantly cut Medicaid over a ten-year period, while also converting it to a block grant. It is not just an assault on Medicaid, but an unequivocal betrayal of people with developmental disabilities and the hard-working men and women who support them in the community. With Governor Baker already asserting that this legislation will cost Massachusetts billions if enacted, the Commonwealth will find itself in a position where draconian cuts to basic supports will be inevitable. The human service industry already struggles to hire people, and will now be gutted even further. The funds available to increase wages will disappear. There have been months of advocacy that have taken place to educate the White House and Congress about what these cuts will do to people with disabilities, as well as the professionals dedicated to helping them. Both the proposed Senate and House bills represent that the people who wrote them and voted for them just don’t care. They know that services for people with disabilities will be cut and that pay for direct care professionals will freeze. Their actions prove they truly don’t give a damn. How did we allow our society to get here? If there is one thing that elected officials should be able to agree upon, it is the duty to protect people with disabilities and the too-long-taken-for-granted workforce that helps them. Instead, President Trump and leadership in the House and Senate have chosen to abandon them and dedicate dollars that currently support these groups to the most affluent in our country via a tax cut. Perhaps worst of all, these actions come following a promise from candidates that, if elected, they would protect Medicaid and the disabled. Obviously, it was a lie from the start.
There is still a process that these bills must go through before becoming law. Essentially, the House and the Senate must find a way to reconcile the two bills into one and send it to the White House to be signed. It is my hope that people will flood lawmakers like never before with phone calls and emails that decry this horrific dismissal of people in need. We should inundate our lawmakers with the notion that people with disabilities have the right to live safely in local communities. We must also remember the professionals who are dedicated to supporting them. So many people have worked way too hard, for far too long, under grueling circumstances to be so blithely abandoned in favor of millionaires and stubborn ideology. Gandhi once said, “The true measure of any society can be found in how it treats its most vulnerable members”. If one believes this, it would seem that we are dangerously close to failing the test.
On Monday, Venture representatives attended a Disability and Health Care Forum with Congressman Joe Kennedy hosted by the Association of Developmental Disability Providers at the Boston Marriott in Newton. The event was attended by staff members and leadership from human service agencies, self-advocates, and family members of people with disabilities. Kennedy shared his commitment to “recognizing the potential in every person”, regardless of their physical or intellectual disability.
Congressman Kennedy expressed his concern about the American Health Care Act and how it will affect the rights of people with intellectual disabilities, with $1.4 trillion in cuts to health care. He shared his concerns regarding threats to social security, affordable housing, food stamps, and even Special Olympics. He pledged his commitment to the disability community, saying that we cannot support “cuts to services that we will all likely use someday, or be used by someone we love”. In addition to thanking attendees for their activism, he encouraged the group to continue advocating and raising their voices. He asked advocates to contact friends and family in other states and encourage them to find one more Republican Senator to oppose the AHCA.
Recently, Congressman Kennedy addressed Congress, rebuking The American Health Care Act. Watch the video here.
Congressman Joseph Kennedy III represents the 4th District of Massachusetts and is a member of the House Energy & Commerce Committee. For more information, visit his web site.
By Mike Hyland, President and CEO
The inexplicable assault on Medicaid continues in the Trump administration and there is good reason for people to worry about it. The President’s stated plan to gut Medicaid by almost a trillion dollars over a ten year period, while cutting taxes for millionaires, will eviscerate crucial programs that allow people with developmental disabilities to live safe and meaningful lives in community-based settings. We should all wonder aloud why this population of marginalized people should be so brazenly abandoned. After we wonder about it, we should be appalled. We should also be gravely concerned for another forgotten group: the dedicated workforce of professionals who support these people in the community.
For too long already, we have allowed people who do the very difficult work of direct care to be almost entirely neglected by national policy makers. Advocacy to guarantee legitimately livable wages and increases, affordable health care, access to higher education and professional development too often fall on deaf ears in Washington D.C. Publicly, officials praise the incredible work being done by so many committed professionals. Privately, they do little to support this workforce. Now, astonishingly, the Trump administration is dismissing these professionals and the value of their skills by proposing a budget that will make it virtually impossible for them to get paid appropriately for the vital work they do every day.
According to the Baker administration, a cut of this magnitude would cost Massachusetts approximately $1.5 billion in the first year alone. Obviously, this kind of cut cannot be absorbed under current revenue collections, meaning that the state will have to significantly cut programs for developmentally disabled people or significantly raise taxes or, more likely, do both. The needs of an already underpaid workforce will certainly not be prioritized in state contracts under such conditions because the money won’t be there. We already have a genuine workforce crisis in the field of human services in this country. By obliterating the funding mechanism that pays direct care professionals, the Trump White House is saying loud and clear that the new administration values the wealthy above the disabled and those who do so much to help them. How sad that after so many years of advances in overcoming disabilities, stigma, bullying, isolation, and discrimination, the disability community now faces its greatest threat from people elected to help them. How sad that the dedicated people who work tirelessly to this day to make these advances possible stand to be abandoned by those who once promised unequivocally not to cut Medicaid.
It is totally irrelevant where the plans to cut Medicaid by such a staggering amount originate. The position, the political party, the individual, or the special interest group that encourages such devastation doesn’t matter. Anyone who plans to do harm to so many must always be challenged and educated to understand what Medicaid truly does. Such massive cuts as currently planned dangerously expose people who need help through no fault of their own. Just as troubling, they signal a total dismissal of the very real needs of the many professionals who already sacrifice so much to help others. These amazing men and women deserve much, much better than that.