Navigating School – The Arc@School Launches Website to Help Students with Disabilities and Their Parents with Special Education Advocacy

“The secret in education lies in respecting the student.” – Ralph Waldo Emerson

Opportunities for students with intellectual and developmental disabilities (I/DD) have come a long way since children were warehoused in institutions with no future or a real education. One giant leap forward was the enactment of the Individuals with Disabilities Education Act (IDEA) in 1975, which for the first time required schools to educate all students with disabilities—including students with I/DD.

The IDEA lays out a process that schools must follow to identify which children with disabilities require additional services to learn, and which supports and services a child needs. That process often leads to the development and implementation of an individualized education program (IEP). The IEP is the roadmap for that child to succeed. The IDEA has led to a generation of people with I/DD whose education opened doors to employment and meaningful lives in the community. However, far too many families and students do not experience an IEP process where their role and their rights are clear and respected. Instead, they feel left out of the process, which is often overwhelming and confusing.

So in 2016, The Arc launched a new initiative, The Arc@School, to build the capacity of The Arc’s nationwide network of chapters to support students with I/DD and their families in developing and implementing IEPs that will help students with I/DD graduate from high school and pursue post-secondary education and employment.

Many students and their families seek advocates to help them understand the IEP process and their rights, and many chapters of The Arc provide lay special education advocacy services for students with I/DD and their families. The Arc@School’s newly-launched website aims to be an online resource for students with disabilities, their parents, and advocates that includes information, best practices, and a resource directory, where you can find links and contact information for chapters of The Arc, protection and advocacy programs, parent centers, and state education agencies in your state.

A successful IEP is the foundation for a future in the community, leading a life of one’s own choosing. If we are to improve outcomes for students with I/DD, we must follow Emerson’s guidance and focus on an IEP approach that respects the student’s goals to achieve his or her dreams.

From 1959 to Today, Workers Still Need Paid Leave

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

KM_C554e-20161207133340Among my grandmother’s papers was a letter dated May 28, 1959, from her employer, the New York retailer Franklin Simon, informing her, “Due to the fact that your illness will be prolonged over a period of time, we have been forced to replace you at this time.”

“However,” the letter continues, “[W]e wish to let you know that your record with us has been good, and we will be happy to consider you for an opening when you are able to return to work again.” She received “two weeks vacation salary which is due you,” but no sick leave or notice pay.

I was shocked. My grandmother had been fired because she needed surgery. When I found the letter a few years ago, the Family and Medical Leave Act had been the law for almost 20 years. Large employers like Franklin Simon couldn’t just fire employees when they needed time off for medical care. Or, at least, they couldn’t fire many of their full time employees.

Born in Austria-Hungary in 1900, my grandmother came to this country with her husband and her son as a refugee from the Nazis in 1940. A housewife in Vienna, here she worked first in a factory sewing clothes for dolls and later as a saleswoman at Franklin Simon.

By 1959, my grandmother was living alone in a fourth floor walk-up in the Bronx. Her husband had died, and her only son was married and had a new baby. I don’t know what financial hardship my grandmother endured when she lost her job. As far as I know, she never reentered the workforce.

Being able to take time off from work for my own medical care, after the birth of my children, and to care for my parents and my sister who had congenital heart disease is only one of the many ways that life has been easier for me than it was for my grandmother. But even today many people can still be fired if they need to take time off from work. And, for many unpaid leave is an empty promise because they simply can’t afford to take time off without pay.

At The Arc, our mission is to promote and protect the human rights of people with intellectual and developmental disabilities (I/DD) and actively support their full inclusion and participation in the community throughout their lifetimes. People with disabilities and their family members are an important part of the American workforce, and like all working people, they need access to paid leave. In my work, leading the Center for Future Planning®, I focus on the needs of the over 800,000 families in which adults with I/DD live with aging caregivers 60 and over. As these parents age and continue to support their sons and daughters to build full and independent lives, the need for flexibility can be critical.

We are joining the call for a robust federal paid family and medical leave law that adheres to a core set of principles. All employees (regardless of the size of the employer, length of service, and number of hours worked) must be able to access paid leave of meaningful length. People need to take leave for different reasons, and all employees should be able to access paid leave for the full range of personal medical and family caregiving needs established in the Family and Medical Leave Act. Families come in many shapes and sizes, so “family” must be inclusively defined. We must design a program that is affordable and cost-effective for workers, employers, and the government. Finally, we must ensure that people who take the leave do not experience adverse employment consequences as a result.

In the disability community, we know how important it is to celebrate one another in good times and to provide support in harder times. An inclusive and robust paid family leave program is an important building block of that support.

A Conversation with Dr. Brian Armour About Oral Health of People with and Without Disabilities

Patient - teeth checkBrian Armour, PhD is an economist with the Centers for Disease Control and Prevention (CDC). He has spent over 15 years in health services research, including work on helping design the CDC Disability and Health Data (http://dhds.cdc.gov/). We asked Brian to discuss findings from the study he led, entitled “A Profile of State-level Differences in the Oral Health of People with and Without Disabilities, in the U.S., in 2004” (Armour BS, Swanson M, Waldman HB, Perlman SP. Public Health Rep. 2008 Jan-Feb;123(1):67-75).

Why did you want to study state-level differences in oral health of people with disabilities?
While there have been disability-specific studies about oral health, no state-level analysis of the oral health of people with disabilities was available. We wanted to assess the oral health of people with disabilities in each state.

Oral health is as important as other types of health care; and good oral health improves general health, self-esteem, communication, nutrition, and quality of life.

What did you discover?
In the year we observed, people with disabilities were less likely than people without disabilities to visit a dentist or dental clinic. They were more likely to have experienced tooth loss.

Our study showed very different results among states. People with disabilities from Mississippi were much less likely than people with disabilities in Connecticut to have visited the dentist or dental clinic in the last year. Only four percent of people with disabilities in the District of Columbia reported having tooth loss as opposed to almost 19 percent of people with disabilities in Kentucky.

What does this mean for people with disabilities and their families?
It is important for everyone, especially for people with disabilities, to practice good oral health habits, like brushing their teeth regularly and flossing. People who need help finding good oral health habits can visit the “Oral Health” section of the CDC website.

Sometimes, people with disabilities – particularly intellectual or developmental disabilities – need assistance from their families and caregivers to help them practice good oral health. If caregivers need tips on how to promote good oral heath, they can check out “Dental Care Every Day: A Caregiver’s Guide” from the National Institute on Health.

A Conversation with Brian Armour About Disability Prevalence Among Healthy Weight, Overweight, and Obese Adults

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Brian Armour, PhD is an economist with the Centers for Disease Control and Prevention (CDC).  He has spent over 15 years in health services research, including work on helping design the CDC Disability and Health Data System (http://dhds.cdc.gov/). We asked Brian to discuss findings from the study he led, entitled Estimating Disability Prevalence Among Adults by Body Mass Index: 2003–2009 National Health Interview Survey” (Armour BS, Courtney-Long E, Campbell VA, Wethington HR. Prev Chronic Dis. 2012; 9: E178. Published online 2012 December 27).

In your article, you assess the number of people who are obese, overweight, or healthy weight and who report having a disability. Why do you think it is important to look at whether people who have weight issues also have disabilities?
This information can help public health programs better recognize the need to design obesity prevention and treatment programs that are inclusive of people with disabilities.

What did you find out?
We found that 41 percent of US adults who are obese also reported having a disability. We also found out that mobility limitation was one of the most frequently reported types of disability among people who are obese.

What does this mean for public health programs?
Public health programs should be considering the needs of those with disabilities when designing their obesity prevention and treatment programs. There are many resources public health organizations can use to help make sure that they are thinking of the needs of people with disabilities. Two good resources include the “Disability Inclusion” section on the CDC’s website as well as the Inclusive Community Health Implementation Package (iChip) program run by the National Center on Health and Physical Activity for People with Disabilities (NCHPAD).

Do you have any recommendations for people with disabilities on how to maintain their weight and avoid becoming obese?
Everyone is different, but it is important that we all are physically active, eat better, and talk to a doctor when not feeling well! People who need help keeping a healthy weight can check out the “Healthy Weight” section of the CDC website for tools to use to help maintain a healthy weight.

Is there anything else you want to say?
Identifying health issues that people with disabilities experience is important, but we also need to help improve the health of people with disabilities by promoting inclusion. This means making sure that people with disabilities are included in all aspects of community life—in our gyms, healthy eating programs, walking paths, transportation and more.

Financial Capability Creates Independence

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

One of the four goals of the Americans with Disabilities Act is economic self-sufficiency. Yet, far too many people with disabilities continue to live in poverty. In 2015, the poverty rate for working aged individuals (16 – 64) with disabilities was 28.5%, compared to a poverty rate of people without disabilities of 12.4%; the poverty rates for children with disabilities are also disproportionately high.

There is no single reason for this high rate of poverty. Similarly, there is no single change that will end poverty for people with disabilities.  Employment rates are far too low, and often many people with disabilities who are employed are under-employed in low paying jobs.  Many people with disabilities rely on means-tested benefits to finance their supports and services. In fact, the very income and asset eligibility requirement of these benefit programs limit beneficiaries’ ability to earn income and build assets. The passage last year of the Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act provides the first opportunity for people with disabilities to build assets without jeopardizing their benefits from means-tested programs.

Disability-related expenses often create an additional financial burden.  In families that have a child with disabilities, parents often reduce their work hours or leave the workforce altogether to care for their child with a disability, resulting in lower family income. More states and localities are enacting paid sick days and paid family leave laws, and more employers are incorporating policies that enable increased workplace flexibility.  Each of these efforts should contribute to lowering the poverty rate for people with disabilities and their families.

Proclaiming April 2016 as National Financial Capability Month, President Obama reminded us, “When every American has the tools they need to get ahead and contribute to our country’s success, we are all better off. . . . Ensuring people have the resources to make informed decisions about their finances is critical in this effort, and during National Financial Capability Month, we recommit to equipping individuals with the knowledge and protections necessary to secure a stable financial future for themselves and their families.”

Financial literacy is a critical tool in this fight to reduce poverty in the disability community.  Developing financial capability skills should be a goal for young people with disabilities throughout their school years.  In the early years, all children should be taught basic concepts related to math and money and should begin to develop decision-making skills.  As they grow, the lessons should become more complex to move them towards financial independence. An important way we can support families is to not only guide parents of children with disabilities through the public benefit system but to also help them build skills to stabilize the family’s financial situation.

The Arc and our partners in the disability community are working tirelessly to increase employment and income of people with disabilities.  For adults with disabilities, increasing financial capability is an important part of planning for a good and independent life in the community.  For more information about creating a plan to Finance the Future, visit The Arc’s Center for Future Planning.

Vote!

“Vote as if your life depends on it,” Justin Dart, Jr., the disability rights pioneer often known as the father of the Americans with Disabilities Act, implored us, “Because it does.”

Our core values call us to focus on voting during Developmental Disabilities Awareness Month in this critical election year.  The Arc’s core value of community underscores that “people with intellectual and developmental disabilities . . . have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society.” Our core value of self-determination provides, “People with intellectual and developmental disabilities, with appropriate resources and supports, can make decisions about their own lives and must be heard on issues that affect their well-being.”

Voting is the most fundamental civil right.  By exercising the right to vote, people have a say in how our democracy moves forward.  As we advocate together for the full inclusion of people with disabilities in our communities, people with disabilities must have an equal say in how our society operates.  Through voting, people with intellectual and developmental disabilities (I/DD) exercise that voice equally with all members of their communities.

By advocating on the issues they care about and supporting candidates who will fight for their agendas, people with I/DD exercise their right to self-determination.  The disability community gains power by showing candidates that it will support those who advocate with us.

Unfortunately, some – but not all – states automatically deprive people with disabilities who are under guardianship of the right to vote. In other states, people with I/DD with guardians retain the right to vote unless a court specifically finds the person ineligible to vote. Self-Advocates Becoming Empowered (SABE) provides guidance on knowing your right to vote if you have a guardian: http://www.sabeusa.org/voting-and-guardianship/. Voting is a core civil right, and people with disabilities should not automatically lose that right if they are under guardianship.  We must fight to change these laws.

The implications of guardianship are far reaching.  It has long been The Arc’s position that most people with I/DD can manage their own affairs with assistance and guidance from others, and that if guardianship is necessary it should be limited and tailored.  Before considering guardianship, people with I/DD and their families should explore the many less restrictive ways that people with I/DD can receive support to make decisions.  The individual and his or her family should understand all of the implications of limiting the person’s autonomy and transferring his or her rights to a guardian, including the possibility that the person will be deprived of the right to vote. For more information on informal and formal ways to support people with I/DD to make their own decisions, visit The Arc’s Center for Future Planning: https://futureplanning.thearc.org/pages/learn/where-to-start/supporting-daily-and-major-life-decisions.

Even if a person has been deprived of the right to vote, he or she can still actively participate during this election season by supporting candidates and advocating on issues.  Let’s make sure the voices of people with I/DD are heard and that the candidates understand our messages.  And, let’s fight to change laws that deprive people with I/DD of their civil rights.

Munch Into March: It’s National Nutrition Month!

March is National Nutrition Month and balanced nutritious eating habits are the corner stone of a healthy and happy life. However, according to a 2014 Disability Scoop article people with disabilities may be slipping below the daily nutritional recommendations. It is difficult to know exactly why, but it may be due to a combination of things, such as how different medications a person takes interacts with one another. People with disabilities may also struggle to afford healthy foods.

According to the National Center on Health, Physical Activity and Disability (NCHPAD), even finding accurate information on nutrition and disability can be a real challenge  because each person metabolizes foods differently based upon their genes, medications they take, and any medical conditions they have. So, it is very difficult to make nutritional recommendations that apply to everyone. There are some things that you, as a caregiver, or someone you care for can do to adapt healthy eating habits.

 

  • Familiarize yourself with nutritional risks and signs of poor nutrition and then find ways to deal with them.
  • Check out this resource from NCHPAD to find ways to adapt healthy eating practices, such as focusing on eating different types and quantities of foods in each meal. Healthy eating patterns also include cutting back on foods with excess sugars and saturated fats, as well as eating less salty foods.
  • Visit Self-Advocacy Online’s Healthy Plate This training, which was developed with input from people with intellectual and/or developmental disabilities (I/DD), uses instructional videos and learning exercises to help people with I/DD learn how to eat healthier.
  • Learn about MyPlate. This resource, developed by the United States Department of Agriculture, aims to build healthy eating habits through the lifetime by offering ideas and tips to help you create a healthier eating style that meets your individual needs.
  • Watch two recorded webinars 1) What’s For Dinner? Planning for Success in Healthy Eating and 2) Putting Nutrition on Your Radar for suggestions on how to improve healthy eating habits for people with I/DD.
  • Check out this video series from NCHPAD to learn how to think creatively when trying to stick to nutritional guidelines or special diets.

Remember, eating healthier doesn’t happen all in one day, but making small changes over time can make a big difference in improving overall health.

Focus on Flossing this February : It’s National Children’s Dental Health Month!

toothbrushAlthough February is technically National Children’s Dental Health Month, oral health is important for people of all ages!

Did you know people with intellectual and developmental disabilities (I/DD) are more likely to have dental and oral health problems than the general population? A study conducted by Tufts University indicates that people with disabilities have a higher prevalence of oral disease such as dental cavities, gum disease, and missing teeth.

Caregivers play a key support role in helping people with I/DD make sure they have good oral hygiene practices like brushing teeth twice a day flossing regularly. However, only 6.4% of family caregivers have received any formal training to help their loved one keep his or her teeth clean

Fortunately, there are several resources out there for caregivers who want to learn how to help their family member improve his or her oral health. Here are a few that you may find interesting:

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!

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