Just Leave the Special Olympics Alone

By Mike Hyland, President and CEO

The 2020 federal budget proposal contains countless line items and notations, as is expected in any document so large and overwhelming.  Even in all that minutiae however, one particularly disgraceful item stands out: the call to eliminate all funding for Special Olympics.  Once again it seems that people with disabilities are in danger of being cast aside and left behind so that money can go to others.  Enough already! 

Education Secretary Betsy DeVos has proposed a budget that would end federal funding for Special Olympics.  As offensive as that proposal is all on its own, her rationale for minimizing the importance of this intentional neglect is absurd.  DeVos stated that Special Olympics “is well supported by the philanthropic community”.  This is true but what the secretary is missing is the whole point of a not-for-profit status.  The Special Olympics, just like provider agencies, is permitted by law to fundraise because the government readily admits that the work is underfunded in the first place.  Taking away those relatively few dollars is a public rejection by DeVos and others of the value of Special Olympics and other organizations that support people with disabilities.  In fact, her proposal would negatively affect close to 300,00 children across the country.

So why is Special Olympics so important?  Because since the ‘60’s, the organization has opened doors and opportunities for people with disabilities in ways that never existed before.  These people were finally given the chance to participate in organized activities that improve health, confidence, and self-esteem while at the same time creating genuine relationships and inclusion.  People with disabilities who were shuttered away for so long now have a bevy of programing choices that span across the world and offer participation and achievement for individuals who were denied these opportunities for generations.  Special Olympics has also worked tirelessly to confront and end the stigma that people with disabilities have always had to endure, giving them a public platform to celebrate their efforts and successes.  It is truly baffling that some in government would choose to make this work even harder than it already is.

Unfortunately, it’s not an unusual step from Secretary DeVos and the administration in D.C.  It’s the 3rd year in a row they’ve proposed slashing funding for Special Olympics, though the first attempt to end funding outright.  It’s difficult to fathom just what those people have against people with disabilities.  The almost $18 million spent annually on Special Olympics is irrelevant in the $4 trillion federal budget, making the annual attack on this crucial funding even more ridiculous.  It’s time that those in power stop seeing the disabilities community as low hanging fruit for budget cuts.  Thankfully, the proposal is not very likely to pass in Congress when the budget is finally done.  What’s troubling, however, is the yearly need to still stand up and try to defend the relative pittance that an organization like Special Olympics gets from the government to provide precious opportunities for so many people.

Join Our Human Rights Committee

Your Opportunity to Make a Difference! We currently have space available to serve on our Human Rights Committee.

Looking for: 


~ A psychologist or master level clinician 
~ An attorney, law student, or paralegal 
~ Registered Nurse or LPN or physician
~ General committee members 


Learn more here: https://www.venturecs.org/learn-more/human-rights-committee/ or contact Robby Dookhran at rdookhran@venturecs.org

This Can’t Be the New Normal

It’s difficult to observe the recent spate of violence in our country and not be shaken.  Last week, we watched law enforcement track down someone who mailed bombs to people he never even met.  Thankfully, no one was hurt in these attempted assaults but that relief was short lived. 

On Saturday, we learned that a bigot entered a synagogue in Pennsylvania and brutally murdered almost a dozen people who were simply there to embrace their religion.  To call this attack horrific is to engage in gross understatement. 

In the past few years we have been forced to watch in horror as people in our country are killed at concerts and at schools and in offices.  While the people who perpetrate this violence are responsible for their actions, we too have a responsibility; we can’t let this become the new normal in our country.

The voice is a powerful tool.  It informs and expresses but it can also lead.  Those of us who have a voice are required to use it to improve things and not to make our situation worse.  For far too long, the daily discourse in this country has been driven not by respect and reason but by anger and abuse.  Whereas people once disagreed, they now just seethe. 

It seems that disregard has replaced discussion and hatred has replaced tolerance.  There are countless people around us who need help and they may never get it so long as rancor defines so much of our conversation.  It is absolutely incumbent upon those with a voice to use that voice to ensure this doesn’t happen.

A return to civility is the only means by which we can recreate safe places where people can disagree and then compromise to advance the greater good.  Our society has devolved to a place where too many people have decided that someone with a different perspective is wrong and dangerous.  Sadly, many of these people are in powerful positions in state and national government. 

It is absolutely necessary for anyone who leads to role model the importance of acceptance and inclusion so that our future is better than our present.  People have the right to be safe when expressing their views and when disagreeing with someone who sees things differently.  It remains concerning that what was once such a tenet of basic freedom is now so endangered.

Lastly, vitriol must be rejected at every turn now.  This anger drives too much of our dialogue and it makes everything worse.  It causes people to react instead of listen and dangerously inflames too many conflicts that don’t need to be conflicts at all.  We must all beware of agenda-driven commentary and grating, thinly-veiled rhetoric that blames victims for what happened to them.  The violence we see unfolding around us is not an opportunity for one side to prevail against another.  Instead, it is a dark reminder that we have created a climate where people who have differing ideas, beliefs, or even just opinions are enemies of each other. 

If this is in fact the new normal, the future is much bleaker than it needs to be.  Let everyone be committed to using a voice and speaking up to make that future as bright as it should be.

ANCOR Advocacy Week

This week is Advocacy Week at ANCOR, our national trade association that represents more than 1,400 community providers of services to people with disabilities.  We are joining them in bringing much-needed attention to the issues that are facing the human services industry today – most notably, the workforce crisis in disability supports.

It is important to us to highlight the good work being done by the professionals in our industry every day – yet high turnover rate is destabilizing critical supports for individuals with disabilities.  Recruitment and retention challenges are leaving people with intellectual and developmental disabilities vulnerable to losing support in the most important aspects of their lives – work, home and health.

Direct Support Professionals (DSPs) are the lifeline of the industry.  They are frontline staff who are providing emotional support, facilitating recreational opportunities, teaching essential life skills, administering medical interventions, communicating with healthcare providers and families, and offering the support required for folks with disabilities to live as independently as possible. 

These professionals, funded primarily through Medicaid, help people live life like everyone else.  They accomplish this through job coaching, supporting daily activities like grocery shopping or transportation, and by offering critical care for behavioral needs such as helping someone through an anxiety attack.

Despite all this, difficulties attracting and retaining DSPs have reached a crisis level:

  • The national DSP turnover rate is 45%
  • 55% of DSPs who leave their positions do so within their first year on the job
  • Low wages and minimal benefits caused by fixed Medicaid rates are significant reasons for this turnover, although there are many other contributing factors

Lacking a stable workforce not only harms individuals with disabilities and their families, but also can lead to increased institutionalization and high costs to states and federal government.  Support from Direct Support Professionals helps people with disabilities live independently or with their families or peers rather than in costlier state-run institutions.

Join in the advocacy efforts by reaching out to your members of Congress!

For more information about ANCOR, click here.

Developmental Disability Awareness Month

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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
  5. 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.

Thank You to our Legislators

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.

There Really Are Plenty of Good Stories

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.

 

Let’s Make Sure We Keep the Promise

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.

Sensory-Friendly Halloween

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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 pmador@venturecs.org.

Direct Support Professionals Week 2017

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.


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