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

Maintaining 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!

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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 IDD.

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.

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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.

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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.

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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 IDD 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 IDD, all it takes is a little passion.

Anthony (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 IDD. And it gives me joy to see them being independent and being happy.

Why is it important for people with IDD 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.

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Holiday Shopping in Entrepreneur Alley

Last 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.

Whatever 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.

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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 (IDD) 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 IDD 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 IDD. 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 IDD. This support is critical throughout the lifespan but it is especially important as adults with IDD 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 IDD 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 IDD 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.

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The Arc’s Statement on the Loss of Daniel Kaufman, Job Coach for People With Developmental Disabilities

Washington, DC – The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (IDD) and their families, released the following statement on the news that Larry Daniel Kaufman (who went by Daniel), a job coach for people with disabilities, was among the victims in the mass shooting at Inland Regional Center in San Bernardino, California:

“Earlier this week a senseless act of violence robbed 14 individuals of their lives and forever changed their families. The Arc and our community are shocked and saddened to learn that Larry Daniel Kaufman, a job coach for people with disabilities, was among the victims. Daniel worked at the coffee cart at the Inland Regional Center where he helped individuals with disabilities develop job skills.

“While Daniel wasn’t tied to The Arc, this loss is particularly painful for us knowing the invaluable work of support professionals like Daniel, and we cannot imagine how this tragedy is impacting those at the Inland Regional Center and his loved ones. Job coaches provide so much for individuals with disabilities, and more often than not they are friends and mentors to the people they work with. Daniel’s choice of profession shows that he was a kind, generous, and passionate individual who was dedicated to serving others. The Arc family extends our condolences to Daniel’s loved ones and all those served by him,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 700 chapters across the country promoting and protecting the human rights of people with IDD 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.

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Donald Trump Did What?

Over the holiday weekend, social media and the airwaves were full of appropriate outrage over Donald Trump’s mocking of the appearance of New York Times reporter Serge Kovaleski’s, a person with a disability.

The disparaging treatment of people with disabilities by celebrities and other public figures is sadly not all that uncommon. The list of celebrities that The Arc has called out in recent years is long – comedian Tracy Morgan, football star Joe Flacco, to name a few.

Now we have a candidate for President of the United States to add to that list.

These recent events remind us that we need to hear from all candidates on where they stand on the issues facing people with disabilities as these voters prepare to vote for their next President in less than a year.

Where do all of the candidates stand on:

  • Ensuring Medicaid, Medicare, Social Security Disability Insurance, and Supplemental Security Income are there for qualified people with disabilities who need support?
  • Expanding opportunity for jobs in the community for people with disabilities?
  • Creating more affordable, accessible, inclusive housing in the community for people with disabilities?
  • Ensuring that the civil rights of people with disabilities are respected in the classroom, the criminal justice system, our health care system, and so on?

Roughly one in five Americans has a disability – and there are millions of Americans who are related to, friends with, or support a person with a disability in their lives. Their votes are up for grabs. And they are listening for substance from the entire field.

And to the media covering these candidates – start asking the tough questions on how those running to be the next President will improve the lives of people with disabilities. You are in a position to change this conversation. Use your power – just as people with disabilities will use theirs come November 2016.

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The Arc Family is Thankful for You!

With Thanksgiving right around the corner, we here at The Arc have a lot to be thankful for and one of the main things is YOU!

The Arc is incomplete without you and your dedication to our mission to ensure that those with intellectual and developmental disabilities live a fully inclusive life. You breathe life into our mission and together we will be successful.

From the board and staff of the National office of The Arc, please accept our sincere and deep appreciation of YOU and your ongoing support of our cause nationally, statewide and locally.

We could not have accomplished all that we did this year without you, so this holiday season we wanted to THANK YOU for your commitment, support and generosity to The Arc.

From all of us here at The Arc, we wish you a safe and happy Thanksgiving.