Get the Year Started Off Right with National Healthy Weight Awareness Month

HealthyEatingMaintaining a healthy weight is hard all year round, but can be especially hard during the winter holiday season. According to the CDC, maintaining healthy weight happens when a person keeps his or her weight at the right amount based upon a person’s height, the amount of food/drink he or she eats, and his or her activity level.

Maintaining a healthy weight can be hard, but people with disabilities tend to have more difficulty maintaining a healthy weight than people without disabilities. This occurs for many reasons, including the use of various prescription drugs that cause weight gain, less opportunity or education about exercising, fewer trainers who know how to work with people with disabilities, and less education about how or why it is important to eat healthily.

Fortunately for all of us who need to be better at watching our weight, January is National Healthy Weight Awareness Month! This month encourages people of all ages, weights, dress/pant sizes, and ability levels to improve their health and well-being by being more active and eating healthier. Here are some things that you and your family can do to improve your health and start your year right:

Reaching your healthy weight goals takes time. While you may not get to your ideal weight overnight, we hope these links will provide you inspiration and opportunities to get active and have a happy and healthier 2016!

Mitsubishi Electric America Foundation Grant Supports Specialisterne Program

By Katherine Murphy, Business Development Assistant for The Arc@Work. The Arc@Work provides companies with employment support services to assist them to find, hire and retain employees with I/DD.

In 2015, The Arc received a 3 year grant from the Mitsubishi Electric America Foundation (MEAF) to support the replication of its Specialisterne project. The Specialisterne program empowers individuals with Autism Spectrum Disorders (ASD) both by providing individual participants the foothold they need to start their careers in IT and by supporting major employers in the field who want to hire more individuals with disabilities. For these individuals, the application and interview process presents social and information-sharing challenges, often leading employers to misinterpret the individuals’ true strengths and abilities. Through the Specialisterne program participants are given the opportunity to go through an interview process that is tailored to highlight their abilities, giving employers the opportunity to see how capable they truly are.

The Arc and its chapters now run the program in 4 locations: Philadelphia, PA; New York, NY; Washington, DC; and Columbia, SC. At these locations, The Arc has already partnered with a number of national corporations, including SAP, CAI, Towers Watson, Microsoft and Ernst and Young, and trained more than 40 individuals with ASD. The Arc of DC successfully completed its second training in September for potential Microsoft jobs in Redmond, WA.  The Arc of Philadelphia is currently partnering with SAP for a second round of hiring, and Ernst and Young to train 20 plus individuals for analyst and administrator positions at both corporations. The Arc of Camden County in New Jersey has stepped in to help train and place individuals in Ernst and Young’s Mount Laurel location.

Thanks to the support of MEAF, The Arc has plans to replicate the Specialisterne program at an additional 2-3 sites in 2016 and we are currently looking in the following locations: New Jersey, North Carolina and Massachusetts. The Arc is excited about the progress that has been made with our Specialisterne program in 2015 and is looking forward to continuing the expansion of the program in 2016.

Autism Now On the Road – Talking about Bullying

By: Amy Goodman, Director Autism Now

The launch of my newest feature on Autism Now: Public Speaking has gone well. I have presented two times. I presented on Marriage, Dating, and Relationships at The Arc of Alabama’s conference in October, and I just presented in New York about Adult Bullying. This presentation focused on what to do after the bullying incident and what to include in an anti-bullying program at The Family Service League of New York in North Hampton Beach, Long Island.

This experience gave me insight into what teachers, professionals, and service personnel need in terms of helping children, adolescence, and adults on the spectrum to overcome this challenge and move on with their life. I learned about different anti-bullying techniques or programs that were being implemented in New York Schools. One such program was a buddy system where an individual with an ASD was paired with a pal or mentor and they had to have lunch with them two or three times a week to work on social skills. Sometimes it worked and sometimes it didn’t as one teacher reported that yes, the two met, but one was eating and one was reading a book and not conversing at all. The point of the meeting was supposed to be getting individuals with ASD to be open and talking and not always passive and avoiding, not just reading, to show them that it is okay to talk too.

I was able to use my personal story to show what the long term effects of bullying are and what kinds of things I think need to be addressed to help individuals on the spectrum to cope with the aftermath. The saying “sticks and stones may break my bones, but words will never hurt me” just isn’t true at all – words do hurt and it is a taunt that can haunt an individual forever. Words can traumatize this vulnerable population in unspeakable ways.

My motto is this: Stand up to the bullies, be brave, and be a buddy not a bully. I know that this is a tall order and it is easier said than done but the more you talk about it and the more you advocate for the bully to do the right thing the better off you will be. Bullies can be mean and nasty but you can be better than them by being yourself, standing up for what you believe in, and doing the right thing by reporting incidents of bullying to the proper authorities. Life can and will get better, just open your eyes and see all the possibilities out there. Above all else believe in yourself and remember the more you know the more empowered you will be.

If you would like to find out more about my services, please contact me at info@autismnow.org or 1-200-600-3489

Transferring Guardianship Across State Lines

By Scott C. Suzuki, Esq., Special Needs Alliance

Many individuals with intellectual or developmental disabilities are capable of making their own decisions, with or without support, and do not need a guardian. If, however, a person with disabilities has a guardian, there are likely to be complications that should be considered before one or both of them relocate to a different state. It may, in fact, be a good time to consider whether a more limited guardianship, power of attorney or supported decision-making might suffice.

Laws governing guardianship sometimes differ significantly from one state to the next, and depending on the jurisdiction, you could find yourself bogged down in red tape for months. The definition of “capacity” varies, as do limits on a guardian’s authority and numerous other factors. Sorting through the details is sufficiently complicated that it would be a good idea to consult with special needs attorneys from each state involved to make the transfer as smooth as possible.

When transferring a guardianship between states, it is important to determine whether the states have adopted the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA). To date, 42 states, Puerto Rico, and Washington, D.C. have enacted the statute (click here for an up-to-date tally). Jurisdictions that have adopted this act will generally recognize the legal findings and guardianship orders issued by other states that have adopted UAGPPJA. The act includes a number of safeguards to ensure that when a person under guardianship moves between states, the move is made for appropriate reasons. In relevant part, the UAGPPJA requires that:

  • the relocation is in the best interests of the person under guardianship;
  • plans to support the person under guardianship in the new home are “reasonable and sufficient”;
  • no parties oppose the move; and
  • the relocation is permanent.

Under UAGPPJA, the guardian requests permission from courts in both the originating and new home states to begin proceedings, and the back-and-forth process becomes largely clerical, streamlining the process. There are exceptions, though. The use of different legal terms by the states involved can slow operations, but veteran attorneys can usually plow through the semantics. And sometimes, jurisdictions retain the right to add steps. When my home state of Hawaii adopted UAGPPJA, the legislature gave courts the discretion to hold evidentiary hearings.

In instances where both states have not approved reciprocity, complications can multiply. Guardians may need to petition the court in the originating state to allow the transfer to take place and may have to start guardianship proceedings from scratch in the new state. Fees could mount for attorneys, medical experts, and others, and the new court may ultimately disagree with previous findings. In the meantime, guardians must continue submitting reports and accountings to the first state. I know of a situation in which the process took two years and involved considerable expense.

The Special Needs Alliance (SNA), with highly experienced member attorneys in most states, is an excellent resource if you’re considering a relocation. SNA attorneys can advise you concerning not only the requirements for transferring guardianship, but also regarding differences in public programs and the availability of local services. If you’re thinking of moving across state lines, it’s best to begin planning as early as possible.

The Special Needs Alliance (SNA) is a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families. The views expressed in the blog are those of the author.

ESEA Rewrite Enacted, Giving States and Districts More Say

By Annie Acosta, Director of Fiscal and Family Support Policy, The Arc

On December 10, President Obama enacted the Every Student Succeeds Act (ESSA).  This law replaces the unpopular No Child Left Behind (NCLB) Act of 2001 that reauthorized the Elementary and Secondary Education Act (ESEA).  NCLB was perhaps most disliked for its unrealistic goals and punitive approaches towards schools that failed to reach them.  This resulted in 45 states seeking flexibility (“waivers”) from the laws various requirements in exchange for state developed plans.  Despite its many problems, however, NCLB did include major advances for student with disabilities, and preserving them was The Arc’s top priority in the legislative process.

NCLB reinforced that students with disabilities are general education students first and should be held to the same high expectations as all other students.  To do so, the law required, among other things, that students with disabilities participate in state and district-wide assessments and to have their progress measured and reported. This increased accountability for students with disabilities has resulted in dramatic increases in graduation rates, from 48% in 2001 to 64% in 2013.

What Does The Arc Think About the ESSA?

This new law is very important to us since it governs the general education classroom where most students with disabilities spend most of their instructional time.  While The Arc had advocated for a stronger federal role in the accountability system, we ultimately lent the bill our support as we believe it is stronger than NCLB and the waivers that are in effect today.

ESSA includes our main priority that students with disabilities continue to be included in state accountability systems and have access to the general education curriculum and challenging academic content standards.  Fortunately, it also added a number of key provisions for students with disabilities, such as limiting the number of students who take alternate assessments, requiring that parents be informed of potential consequences of taking such exams, intervening in schools were students with disabilities consistently underperform, and requiring states to explain how they will improve conditions for learning, such as reducing bullying and aversive behavioral interventions.

What Next?

Federal and state regulations will be developed to implement the new law.  It is critical that the I/DD community participate actively throughout this process.  The Arc’s chapter network can be instrumental in ensuring that states act in the best interests of students with I/DD.  The bottom line is there is much work ahead – we must be at the table discussing critical questions such as the design of tests, the number of tests, and what their academic standards ought to be.  By working together, we can help to fulfill the law’s purpose to “provide all children significant opportunity to receive fair, equitable, and high quality education and to close achievement gaps.”

The Arc Awarded National Grant to Engage in Martin Luther King Jr. National Service Day Activities

WASHINGTON, DC – The federal agency that leads national Martin Luther King, Jr. Day of Service, the Corporation for National and Community Service (CNCS), has selected The Arc and five other organizations as grantees to plan and execute volunteer projects that will unite Americans in service. The 2016 MLK Day of Service will take place on Monday, January 18, and The Arc, through select chapters, will be involved in service events throughout January where people with intellectual and developmental disabilities (I/DD) will volunteer alongside people without disabilities in an activity related to access to healthy food.

“People with intellectual and developmental disabilities have so much to offer their communities, and this day of service opportunity provides them the chance to give back.  Many perceive people with disabilities as the ones in need of service – but in reality, they are often a part of civic engagement at the state, local, and national level.  Being a part of this national community service day will shine a spotlight on what people with disabilities offer in their community,” said Peter Berns, CEO of The Arc.

Each year, hundreds of thousands of Americans participate in the annual Dr. Martin Luther King Jr. National Day of Service, the nation’s largest day of civic engagement. In 1994, Congress designated MLK Day as the first and only federal holiday observed as a national day of service, and charged CNCS with leading this effort.

Each project will serve a community that has seen an increase in unemployment and the number of children living in poverty over the past 5 years. Food security, especially healthy food for children, is a concern for these communities. Each chapter of The Arc will partner with a local service club to carry out activities.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 665 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The Arc Announces $1.4 Million Google.org Investment in Tech Toolbox

Washington, DC – The Arc is thrilled to announce that it is a recipient of a $1.4 million grant from Google.org. Made through the Google Impact Challenge: Disabilities, the grant will support an online search, recommendation and coaching platform that will help people with cognitive disabilities find and adopt technology to live fuller lives.

With Google.org’s support, The Arc will expand the features and services around its Tech Toolbox, a place to find, share, rate and review technology for people with intellectual or developmental disabilities (I/DD).  More than 20 million people in the United States have a cognitive disability. The number of apps and assistive technologies available to support this population is growing rapidly, but the outcomes they promise are rarely backed by evidence, and it is difficult to match the right tool to the unique and evolving needs of the individual.

“At Google, we know that good things happen when you help people find the right information. We’re thrilled to support The Arc’s efforts to make it as easy as possible for people with disabilities and their families to find the right technology to meet their needs. In the long run, we see the Tech Toolbox becoming a go-to resource for information about the ways that technology can change the lives of people with intellectual and developmental disabilities by sharing information about solutions that really work,” said Jacquelline Fuller, Director, Google.org.

The Arc will build a web platform that uses profile data and expert reviews to help people with cognitive disabilities and their caregivers easily identify the technologies that are most likely to produce positive outcomes based on evidence from people with similar profiles.

“People with disabilities, their family members, providers, and friends are seeking out technology to help them lead more independent and fulfilling lives.  Even though many of The Arc’s chapters have already started to address this demand, with great success, not enough is known about how this constantly evolving marketplace is meeting their needs, and how information from their experiences can be harnessed to make greater strides in the field.  We are excited to be working with Google, a company synonymous with innovation, to connect our network and individuals to their know-how in the technology space.  It’s going to be an exciting journey as we partner with them to build this capability,” said Peter Berns, CEO of The Arc.

The Arc will use its national service provider network to deliver more than 100,000 targeted and personalized technology recommendations over the next two and a half years. The platform will be open to the public and, at scale, will reach millions of individuals and their families.

In 2014, The Arc started building the Tech Toolbox because of the need for a service that helps people with I/DD access technology.  Through a national partnership with the Comcast Foundation, The Arc was able to launch a beta version of the platform in 2015. Staff from across The Arc’s chapter network came together to design a one-stop-shop, peer- reviewed directory of technology products that are effective for people with I/DD. Through this directory, chapter staff, people with I/DD, and the general public can find, review, and post examples of technology tools that work well for them. The Tech Toolbox currently contains nearly 500 apps and devices.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 665 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

 

 

Editor’s Notes

The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Cognitive disability includes intellectual disability, including those caused by congenital conditions such as Down syndrome, autism, and Fetal Alcohol Syndrome as well as age-related conditions such as Dementia. The diagnosis may also include less severe conditions such as Dyslexia, Attention Deficit Disorder, and other learning disabilities.

Never too Young to Make an Impact

Wings for Autism has been expanding across the country since last year, and since national expansion began more than 500 families have benefited from this innovative program. While this program obviously appeals to individuals with I/DD and their families who want a test run of what travel on an airplane might be like, this year we were pleasantly surprised when 3 teenagers made it a mission to help fundraise for this exciting program in addition to serving as volunteers. Their actions show it doesn’t matter what your age, you can make a difference in the lives of people with I/DD, all it takes is a little passion.

wings blogAnthony (Chenghao) Cheng, Lily Zhu, & Xinyi Xie reached out to friends and family to raise hundreds of dollars for Wings for Autism. We had a chance to catch up with them during our event at Dulles International Airport in northern Virginia earlier this year to learn about what sparked their interest in this program. Their answers were inspiring.

Why did you all decide to go out of your way to help raise money for The Arc’s Wings for Autism Program?

Xinyi – Firstly because I enjoy to spend time with children. It is my understanding that it is important for people with disabilities to be part of society and make friends. I am passionate about that.

Anthony – Everyone deserves to be independent, and I should help.

Lily – I love children also and interacting with people with I/DD. And it gives me joy to see them being independent and being happy.

Why is it important for people with I/DD to have someone to count on?
Xinyi – We all need support in everything. We needs support in what we do so we should give support to others too.

Lily – It is important for kids to count on people other than their family. That will help them become more confident.

Anthony – It is exciting to see kids grow and be stronger.

Why is volunteering important?

Lily – Important for people to be aware. It is hard to empathize if you don’t interact with other people. But events like this help you realize the needs of others and help them be independent. Volunteering is an important step to raising awareness.

Xinyi – Leading by what we do. If people do it, others will follow in their steps.

A big thank you to three amazing volunteers, donors and advocates! We are so thankful for your support of The Arc and the example you are setting for your peers.

Holiday Shopping in Entrepreneur Alley

DSCN1746Last minute holiday shopping got you down? We have the solution for you! Each year The Arc invites self-advocates who own their own micro-businesses to participate in Entrepreneur Alley during The Arc’s national convention. These entrepreneurs have a variety of amazing products available for purchase.

IMG_9723Whatever wish list you are working to fulfill, these businesses have what you are looking for including custom artwork, greeting cards, delicious confections, jewelry, collectibles, hand crafted wood work, books, and beautiful paintings.  We encourage you to skip the department stores and visit some of our talented entrepreneur’s websites to fill your stockings this holiday season!

If you or someone you know has a microbusiness you would like to bring to The Arc’s 2016 Convention, please contact Sarah Kennedy at SKennedy@TheArc.org.

Valuing the Humanity of All Members of a Family 

By Robin Shaffert, Senior Executive Officer, Individual & Family Support, The Arc

 

The story, “Four Bodies in Elmhurst: Why would an 82­year­old man kill his son, his daughter, his wife and himself?” appears in today’s New York Times magazine section.  Jeff Himmelman reports on the heartbreaking murder of two adults with intellectual and developmental disabilities (I/DD) and their mother, by the father who also committed suicide.

On Tuesday, the story appeared on the Times’s website, and The Arc shared it on social media.  Since then, I have been reading the comments from readers of the Times and The Arc’s Facebook page.  I find myself deeply troubled – yet not altogether surprised – that the most common sentiment is that we shouldn’t judge the father.

We must judge the father.  The father committed three murders.  He ended the lives of two of his children and his wife.  If we do not condemn that action, we do not value their humanity.  Our core values are clear: The Arc believes that people with intellectual and developmental disabilities are entitled to the respect, dignity, equality, safety, and security accorded to other members of society, and are equal before the law.  When people with I/DD are murdered, we cannot suggest that their murder is understandable or justifiable.

After we condemn these murders, we can look at what we can learn from them.  In Mr. Himmelman’s portrayal of the Stack family, we can begin to see where we as a society fall short in supporting families that include a person with I/DD.  But limited, inadequate, or the complete absence of services and supports can never justify murder.  This fact, however, doesn’t absolve us of our responsibility to do a better job supporting families that include members with I/DD.  This support is critical throughout the lifespan but it is especially important as adults with I/DD transition from their family homes to other living situations in our communities.

Sometimes we hear that parents are driven to these horrific acts because there are no decent places for their children to live and receive the supports and services they need when they leave the family home.  That wasn’t the case for the Stack family.  The son and daughter were both in good living situations.  These situations may not have been perfect, and Mr. Stack, the story tells us, was vigilant in working with the providers to make sure his son and daughter got the supports he felt they needed.

The Stacks were able to do what many families struggle with.  They overcame barriers and created a future plan for their son and daughter.  They found housing options and daily activities – and they figured out how to finance them.  Yet, for some unknowable reason, Mr. Stack decided to take the lives of his wife, son, and daughter.

I find myself asking whether things would have been different had Mr. Stack received help in addressing the guilt he felt about the possibility that his exposure to toxins during the Korean War caused or contributed to their disabilities, or if his family had received more support during the decades that he and his wife cared so lovingly for their son or daughter.   We’ll never know.

I lead The Arc’s Center for Future Planning.  My colleagues and I recognize the complexity and the enormity of the issue we are addressing.  There are 600,000-700,000 adults with I/DD living with caregivers 60 and over that have no plan in place for what is going to happen when those caregivers can no longer provide support.  To create a good plan, the individual with I/DD and his or her family must take into account virtually every aspect of the person’s life.  This story teaches us that as important as it is to figure out benefits and housing, it is at least as important to ensure that families receive the emotional support they need to make these difficult transitions.  Many chapters of The Arc and other service providers are working to provide that support.  Yet I fear for the families that aren’t connected to get that help, and I know that the supports that are available in many areas are inadequate.

Like many of you, when I finished the story, I asked myself – what can I do to help prevent tragedies like this from happening again?  As we move forward, we should remember the Stack family by striving to support families in a way that values the humanity of all of their members.  We can do this in small ways like checking in on families that may be isolated.  We can also work together to advocate at the local, state, and federal level for the resources to enable us to support all of our families.