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.

 

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 (I/DD) 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 (I/DD), 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 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’s Heart Breaks for Victims in San Bernardino

Washington, DC – The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD) and their families, released the following statement on the tragic shooting at the Inland Regional Center in San Bernardino, California:

“Our deepest condolences go out to the families and friends of those who lost their lives in this tragedy, the people suffering injuries, and the families impacted by this senseless act. The Arc’s collective heart is broken.

“The Inland Regional Center is one of thousands of service systems across the country for people with I/DD and their families. It’s a place where people with disabilities, their families, caregivers, and dedicated staff gather to access services, learn how to navigate the service delivery system, and enjoy functions like the holiday party that took place the day before the shooting. It’s not a place you would ever expect such violence.

“Today, and every day after, people with disabilities, parents, siblings, caregivers, and staff will walk into the Inland Regional Center. When will they feel safe again? They will live with this trauma, feel the pain like anyone else, and they must have access to services to support them to overcome it. Far too often in our society, the abilities of people with I/DD are underestimated. Appropriate supports must be available to them to process and heal after this tragedy, otherwise it will be an open wound. We owe all of those touched by this tragedy the dignity of healing,” said Peter Berns, CEO of The Arc.

Read The Arc of California’s statement.

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.

Only a day? We celebrate International Day of People with Disabilities all year!

Screen Shot 2015-12-01 at 10.02.05 AMEvery year the International Day of People with Disabilities takes place on December 3rd. However, when you are an organization that has been around for as long as we have, you celebrate it every day, all year long!

This year the theme is “Inclusion matters: access and empowerment for people of all abilities.” There are an estimated one billion people with disabilities living in the world, all of which still face obstacles and barriers to inclusion, health care, and justice. Did you know that people with disabilities around the world also have less access to health care than the general population?

The CDC indicates that people with disabilities have poorer overall health and have less access to good health care. So how can we help decrease the barriers that face people with intellectual and/or developmental disabilities (I/DD)?

In our webinar, “Identifying and Improving Barriers to Healthcare for Individuals with I/DD,” Dr. Meg Traci, Ph.D., discusses the barriers that confront the I/DD community when accessing adequate health care. She not only addresses the barriers but offers techniques to resolve them. For further information, check out our other webinar on barriers in health promotion, “Barriers to Health Promotion for Persons with Disabilities.”

While there are plenty of barriers to health care, there are always ways that we can improve access for all people. Take a look at this video highlighting Mark and his work with 4th year medical students.

What about you? How are you helping to improve access and empowerment of people with IDD? Although you can’t solve every issue in at one time, the important thing is to get involved!

Get involved by:

Here are some great steps to see your event come to life in your own community:

Good luck celebrating and organizing your community to promote inclusion of people with disabilities!

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.

Thank you! 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.

The Arc Joins #GivingTuesday

#GivingTuesday_Shareable_ImageThe Arc is joining the national #GivingTuesday movement again this year and we need your help!

As part of The Arc’s family, please help us kick off the holiday season by joining millions in taking collaborative action to improve their local communities and give back in better, smarter ways to the charities and causes they support to help create a better world.

Join us in harnessing the power of social media to demonstrate and expand the vibrant community that makes up The Arc’s Family. Please show your support on social media to inspire and encourage your family, friends and network to take action as well this #GivingTuesday.

Millions of individuals with intellectual and developmental disabilities (I/DD) and their families are depending on The Arc. This #GivingTuesday, show that they can count on you by participating in one of the following ways:

 

  • Share your support by posting our “I Support The Arc” Button on Facebook or Twitter and tag The Arc and #GivingTuesday

 

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  • Encourage your friends and family to do the same.

The Arc recognizes that all the work we do would not be possible without our family and that not all support comes in the same way. Thank you!

Help The Arc kick off the holiday season today and Achieve with Us!

CONGRESS PASSED LEGISLATION THAT WILL ENABLE MILITARY MEMBERS TO NAME SPECIAL NEEDS TRUSTS AS BENEFICIARIES OF A SURVIVOR BENEFIT PLAN; RETIREE ACTION POSSIBLE SOON

by: Theresa M. Varnet M.S.W., J.D. (Spain, Spain & Varnet, P.C., Chicago, IL and Fletcher Tilton, P.C., Worcester, MA)

On December 15, 2014, Congress passed the Disabled Military Child Protection Act which allows military families to protect their Survivor Benefit Plans (SBP) by allowing the benefits to be directed to a qualified special needs trust. If there are any funds left in the trust when the disabled beneficiary dies, the funds are paid back to Medicaid for the cost of Medicaid funded services provided to the individual over his/her lifetime.

The Military allows military members who have children with disabilities to participate in the SBP. SBP permits monthly benefit stipends of up to 55% of the military member’s pension to be paid for the benefit of a disabled adult child. Prior to the passage of this Act, benefits had to be paid directly to the adult child. The Disabled Military Child Protection Act will allow the survivor benefit to be paid directly to a “payback special needs trust” for the benefit of a child with a disability. If the benefits are distributed directly to the trust, the beneficiary will remain eligible for needs-based benefits such as SSI and Medicaid.

Beneficiaries of a parent’s SBP can now retain eligibility for Medicaid by assigning the military pension to the qualified special needs trust. A qualified special needs trust is sometimes called a ‘payback’ trust, first party trust, self-settled trust, d4(a), d4(c) trust, or an OBRA’93 trust. It is not the typical 3rd party special needs trust that parents provide in their wills and living trusts. By assigning benefits to a qualified special needs trust, these individuals will now be able to remain eligible for Medicaid which is the primary payer of long term supports and services available to persons with disabilities. Up until now, individuals who received SBP were often locked out of Medicaid funded support programs because their income was deemed too high. If the pension benefits caused him to be over income for Medicaid but did not provide sufficient income for private care, the beneficiary of a SBP was often in a worse off position because of the receipt of this pension. S/he had too much income to qualify for Medicaid but not enough income to meet one’s medical and personal care needs.

It is anticipated that military regulations will be written by the end of this year or by early 2016. Early indications are that the designation to a trust can be made by the military member anytime during his lifetime, but also assignable by the benefit recipient if or when the benefit is being received. Retirees cannot make the assignment now, but hopefully will be able to do so by early next year. We were initially told that there was going to be a narrow window of opportunity to change the beneficiary designation from the disabled child to a trust. We are now told that there will not be a restriction as to when the designation to a trust can be made. Of course, until the regulations are written, we will not know for certain what will be allowed. If you know anyone who may be receiving SBP benefits or could be eligible in the future, it is important to get this information out to them so they are ready to make the change in beneficiary as soon as possible. It is important to meet with an attorney knowledgeable in drafting a ‘payback’ trust. It is critical that the correct type of trust be designated as a beneficiary. If a typical 3rd party special needs trust is used that does not contain the restrictive language required in a payback trust, the assignment will not qualify the beneficiary of the trust for Medicaid and SSI. Parents can find the name of an attorney familiar with drafting qualified payback special needs trusts through the websites for the Academy for Special Needs Planners (ASNP) or the Special Needs Alliance (SNA). ASNP AND SNA are two professional organizations for attorneys who concentrate in this very unique and dynamic area of law.

American Diabetes Month: Healthy Lifestyle Choices and Exercise.

5736670215_b791c39490_zType 2 diabetes affects a staggering 23.6 million people or in another light an astonishing 7.8 percent of the American population. Studies suggest that adults who have autism are at a higher risk for diabetes, obesity, and heart complications.

In light of November being American Diabetes Awareness Month we wanted to highlight some risk factors of diabetes as well as some healthy eating tips to help decrease the risk of developing type 2 diabetes.

Risk Factors:

In order to prevent diabetes, it is important to know that there are certain risk factors that increase your chances of developing diabetes.  While there are more risk factors, below is a list of some of the more prevalent hazards:

  • Being overweight or obese
  • Not getting enough exercise or extended physical inactivity
  • Having a high cholesterol count
  • A history of heart disease
  • Hypertension

Healthy Lifestyle

The only way to be healthier is to live a healthier lifestyle! Combating the risk factors of diabetes can include eating healthier  and increasing and maintaining regular exercise.

Did you know that adults with disabilities who don’t exercise are 50% more likely to develop chronic diseases? Getting more exercise doesn’t mean you have to sign up for a marathon or triathlon, try adding a new physical activity to your routine. Remember to stay active for 30 minutes, 3 times per week.

Eating healthier is a great way to maintain a healthy weight, as well as protect against the onset of diabetes. Try a couple of the tips below:

  • Drink plenty of water
  • Choose foods low in salt
  • Cut down on sugary food and candies
  • Eat lean meats (fish, chicken, or even vegetarian alternatives)
  • Eat balanced meals

Other Resources

Check out these other great resources to keep healthy and prevent developing diabetes!

Diabetes booklet for Self-Advocates

Healthier Eating Ideas

Diabetes Risk Factors Test

Diabetes Health Resources

NCHPAD Diabetes Resources

Need Health Insurance? Open Enrollment is Now!

2016 Open Enrollment
November 1, 2015
Open enrollment begins

December 15, 2015
Enroll before this date to have coverage January 1, 2016

January 31, 2016
Open enrollment ends

If you are uninsured or looking for affordable health insurance, now is the time for you to look! During “open enrollment” you can purchase private health insurance through the marketplace in each state. Depending on your income, you may be eligible for assistance with your health insurance costs.
If you currently have insurance through the marketplace, you should look at your current plan and determine if it will continue to meet your needs, or select a better plan. If you do not take action, you will be automatically re-enrolled in your current plan. Re-enrollment provides an important opportunity to report any changes to your income. If you income has increased, reporting changes to the marketplace may help you avoid paying future penalties.

Why you should check your coverage:

  • Even if you like your health plan, new plans may be available and premiums or cost sharing may have changed since last year.
  • Even if your income has not changed, you could be eligible for more financial assistance.

If you have a disability or a health condition, pay attention to possible changes:

  • Are a broad range of health care providers included in the health plan’s network of providers?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent that other “physical” health benefits are covered?

Where to get help?
Health insurance can be complicated. If you or your family member needs assistance with understanding the options, healthcare.gov can help. This website has information about seeking assistance in local communities, explanations of health insurance terms, enrollment information and much more. There is also a 24-hour phone line for consumer assistance at 1-800-318-2596 to call for help.