Gaining a new perspective

A temporary disability has opened my eyes. It’s amazing how unaware and intolerant so many people still are of individuals who have a disability. It a new experience for me to feel how the community and society treat someone with additional accessibility needs.

For several years, my arthritic hip has been giving me considerable pain. Over the last six months, I have begun using a cane and taking a great many pain killers to ease the aches. I would arrive at my destination and circle parking lots incessantly to find the closest space. If I couldn’t find one close by, I would leave rather than walk across a large lot.  Every activity of daily living is impacted, from climbing stairs, to getting in the car, to accessing public transportation which had been my main means to get to work.

I’m a big proponent of public transportation, and I used to bus into the office regularly.   However, I have recently felt uncomfortable being an “old lady with a cane” needing a seat on overcrowded buses. I am embarrassed to ask another rider to stand while I sit (because not everyone offers!) – and so I have gotten back in my car most days. I recently began using a temporary disability parking placard so that I can actually shop and go into those stores whose parking lots I would circle. It is truly a great benefit if one needs it even for the short run to have accessibility to everyday services. Sometimes I get dirty looks because I don’t appear to be disabled, even though I use a cane most days now.

I’ve been reflecting on this experience and realize my own privilege. Many of the individuals we support at The Arc are not “temporarily” disabled. They deal with these scenarios, and so much more, every single day of their lives. They do not always find curb cuts, or have access to an elevator instead of stairs, or even have push button doors to enter buildings. They don’t have the option to use their personal car and avoid the inconvenience or embarrassment of having to displace other riders in seats.

In December, I’m looking forward to a successful surgery and having full use of my hip again. However, I am grateful for this experience to gain a better understanding of the concerns that affect individuals with a disability. I’ve experienced the unreliability of public transit, the discomfort of taking a seat from another temporarily able person, and the dirty looks I get when I use my temporary disability parking placard. With this first-person experience under my belt, I’ve gained a new perspective and find that my passion to fight for inclusion has been amplified.

disability-art-d9426663bc8bbce5

Taking Flight…Again!

Sometimes, inclusion takes extra effort on our part, however that energy usually pays off in a big way. Last weekend, we partnered with Alaska Airlines, The Port of Seattle, and the TSA for our second Wings for Autism event at SeaTac Airport. We made progress together as a community to assure that families raising a child with autism can travel by air more easily.

More than 40 families and 50 individuals on the autism spectrum were able to participate in this unique travel training experience. Before families gathered, we provided three educational programs for the airport and airline personnel and answered many questions they had about autism. It was a joy to hear that their questions often sounded like “what else can I do to include people?” These travel professionals want to be more inclusive. They are genuinely eager for information, and they seek guidance on how they can change themselves. Everyone who attended a training received one of these pins, so look for airport personnel wearing this pin the next time you to to the airport.

Wings

We have found that the personnel at Alaska Airlines, The Port of Seattle, and The TSA (don’t be too surprised!) see themselves as helpers – helping everyone to make the travel experience positive and safe for everyone. I know that The TSA usually gets a bad rap because of their security role (we do want to stay safe after all), but their commitment to this program truly deserves extra applause. One of the TSA officers told us that they offer a program where a family or individuals with accommodation needs can call ahead to ask for assistance from the TSA through the entire process…. cool!  Check out the TSA Cares website at http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions for more information.

Additionally, Alaska Airlines posts our “social story” on their website (http://www.alaskaair.com/content/travel-info/accessible-services/specialservices-developmental.aspx) to help families to prepare their child for the airport and all the transitions, AND you can call them and ask for additional assistance as well. The personnel repeatedly told us to just let them know either ahead of time or at the airport what they can do to make your travel easier.

This was cool, too! Local NPR station KUOW sent report Ruby de Luna to spend the day with us at the airport. Please check out the story to hear about the impact the Wings for Autism program is having to improve inclusion at SeaTac Airport. http://kuow.org/post/sea-tac-kids-autism-take-flight

Inclusion is important to us, and we want to be sure you are included. So please, consider joining us on our next Wings for Autism trip in 2015! (Registration should open in late December.) We are committed to making life better for everyone by working with the greater community to help them become more inclusive. As I’ve said time and time again – what we want for ourselves, we want for everybody. When it comes to travel, we want individuals with I/DD and their families to have more choices and opportunities to enjoy all that our vibrant and diverse world has to offer.

A Labor of Love

Image

labor

The end of summer is always marked by Labor Day—when everyone is ready for one last hoorah before fall. In all of the celebrations, we sometimes forget the reason for the holiday. Labor Day is a celebration of workers throughout our nation, and the strength they add to our country because of their toil.

I have spent my career working for a goal that energizes my soul and makes a difference in the lives of people with I/DD. I am proud to be part of the social and economic fabric that contributes to the well-being of my community, helping to make the world more inclusive for everyone. It feels great to have purpose each day, and my work has given extra meaning to my professional life. I am grateful for this work.

But not everyone has the same opportunity and access to employment. According to the Bureau of Labor Statistics, fewer than 18% of individuals with a disability are employed in this country. In our field, we know that individuals with I/DD often have difficulty finding employment. They are not included in what is a very important part of the human experience – having work that makes them proud and gives them purpose to help make their communities better. They want to be full tax-paying citizens who do an honest day’s work for an honest day’s pay. Through our advocacy and with the support of other local groups like WISE, ENSO, Goodwill, Community Employment Alliance, At Work (and many others!), we have made great strides in improving this situation in our region. It will remain important that we advocate for more work opportunities for individuals with I/DD who want to, and are fully capable of enriching our community through their work.

As you enjoy this last weekend of BBQs and getaways, remember to celebrate ALL of the people who contribute to a vibrant and successful economy in Seattle, and I challenge you to commit to doing something that will also help others who want to be part of the workforce, too.

Source: http://www.bls.gov/news.release/disabl.nr0.htm

 

 

Traveling Tips for People with I/DD

Everyone needs a vacation, and summer is certainly a popular time to take a break and relax. In this week’s blog post from reader Emma Wilkins, she talks about some of the ways that people with disabilities are receiving better accommodations by the travel industry. Our own Wings for Autism experience at The Arc of King County demonstrated how the Port of Seattle and Alaska Airlines are interested in improving travel opportunities for people with autism at SeaTac. As we begin preparations for our next Wings for Autism, it is evident that people with disabilities will continue to have new opportunities to enjoy vacations of all sorts. Because what we want for ourselves, we want for everyone – and that includes a fun time to relax with family and friends on vacation!


 

Image

Choosing a Vacation – Considerations for Individuals with a Disability

By Emma Wilkins

Although there is still much work still to be done to challenge discrimination towards those with disabilities, it is clear that the travel and tourism industry is now recognizing the rights and need of their customers with disabilities. Just a few years ago there was a profound lack of companies offering supported vacations for individuals with a disability. Slowly this improved with the introduction of the Americans with Disabilities act, and similar legislation in most other countries. These anti-discriminatory laws have helped people with disabilities to have the same experiences as everyone else. It appears now that some savvy companies realize this gap in the market, and now there are lots of travel companies catering for all types of vacationers.

What types of vacations are available?

With a just a little research, it appears pretty much anything and everything is possible! With a large range of destinations, both in the US and internationally, all types of adventure, sight-seeing, and cruise vacations are available. They offer various levels of support, enabling independence and support for individuals with intellectual and developmental disabilities.

Advice for parents

Perhaps intuitive, the main piece of advice is to plan ahead—with your child’s needs in mind. Although you cannot plan for every eventuality, a little preparation will go a long way to minimize any problems you may have while away. Several companies cater to people with a range of abilities, so everyone in your group can enjoy the same experiences together.

Regardless of the travel company used, parents should notify them of any additional needs in advance. With advanced knowledge, many companies can provide extra services to assist individuals with special needs. Additionally, knowing what is and isn’t available in advance will give you realistic expectations before you travel, relieving stress and making the trip more enjoyable for everyone.

How are you getting there?

Whether it is a family trip that you are planning or some much needed respite care, there are many options and assistance available. Some organizations offer a door-to-door service for your convenience and peace of mind. You may want to consider how you travel to your destination in as much detail as the location itself. If travelling by air, you could consider smaller airports rather than the larger international ones. The homeland security website has advice on going through the security checkpoints, and they recommend calling 72 hours ahead to learn about special arrangements that are possible to minimize any problems. Travelling at quieter times of day, or avoiding peak seasons may also make your trip easier. Wherever possible, try and keep some ‘normal routines’ in place. For example, try to be consistent with meal times and bed times, and be sure to bring your child’s favorite games consoles, iPod, or DVD player. Additionally, items of special importance (such as a favorite stuffed animal) should be kept at hand to help diffuse stressful situations.

The same rights as anyone else to enjoy vacation time

Everyone, regardless of disability, has the right to enjoy the experience of travelling to visit new countries, climates, and cultures. The benefits and enjoyment of such experiences outweigh the difficulties of such an undertaking.

For many people their vacation time is precious and much anticipated all year long—a chance to escape the stresses and strains of everyday life. People with disabilities and their families are also in need of this special time to build new memories and distress together. It is exciting to see that the travel industry is embracing inclusion and providing a better experience for travelers with I/DD.

 

The Privilege of Work Worth Doing

Image

“Being privileged to work hard for long hours at something you think is worth doing is the best kind of play.”  – Robert A. Heinlein

Earlier this week, I had a conversation with a colleague in the for-profit world that has been rattling in my mind ever since.  He indicated that working with his normal business clients was stimulating, but he was grateful to complete work for The Arc of King County because it felt like work worth doing. Being a science fiction fan, I thought about Heinlein’s quote and thought, “I am fortunate to play everyday”.

Those who choose to work in the nonprofit sector are engaged in hard work that is worth doing. I think it is especially true for people who work with intellectual and developmental disabilities. The struggle for civil rights in the disability field continues, but we are edging closer to full inclusion and acceptance every day. We aren’t asking for anything outrageous. We simply want for ourselves exactly what we want for everyone else.

There is no doubt the work is hard and long. Some days have been heartbreaking, as we seem to take a step backwards. However, some days bring tears of joy to my eyes as I witness the progress we are making. I am so very privileged to be part of this work, and I am delighted to have the chance to “play” with all of you as we continue to create a more inclusive world for everyone.  

PUSHing for Change

People have a lot to say about “kids” today, and not all of it is kind. However, I’ve recently had a chance to meet several young men who I want to brag about. It’s true that one of them is my son, but I think you’ll agree that it’s worth my crowing about him and his fraternity brothers.

On Wednesday, 27 young men from Pi Kappa Phi chapters from universities around the country departed from Seattle along with their wonderful support crew to complete a trans-American trek to Washington, D.C. on bikes. Their 4,270-mile Journey of Hope will be punctuated by the reason for their trip – “friendship visits” with people who have disabilities from all across our country. Their visits, and their very long ride, will raise money and awareness for people with disabilities. The men on this ride and two other groups departing from Los Angeles and San Francisco have raised nearly $500,000 this year alone!

The Arc of King County had the privilege of hosting the young men for our very own friendship visit on Tuesday before they left on their summer adventure. The young men arrived promptly at 1pm to meet with people from our Supported Living Program and Banchero supported living program for a picnic lunch at the Olympic Sculpture Park. Everyone enjoyed having a delicious lunch in the beautiful sun shine, however the real highlight for me was listening to the conversations that took place between these men and the people we serve. They talked about all sorts of subjects—favorite movies, vacations, hobbies, and pets to name just a few—and they really learned a lot about each other.

As I have reflected on that afternoon this week,  I can see how their Journey of Hope will be changing minds. They will not only be changed personally by the journey and influence how some people still view people with disabilities, but they will also change opinions that “old people” like me have about this younger generation. They are change agents who are making a difference by taking action, and I am very proud that one of those young people making our world a better place for all people to live, work, and play is my son.

If you want to follow the Journey of Hope, check out their team blog at http://pushamerica.org/johtajournal.aspx.

 Image

Why do more people with disabilities lose custody of their children?

At The Arc of King County, we encourage our constituents to write to us about the stories that are important to them. We recently received one such article from Emma Crosby who is concerned about parents with disabilities being able to have children, and keep custody of their children. Emma wants to share her research and opinions on the topic. Following her thoughts are several resources for additional reading and research, as well as the link to The Arc of the US official position. At The Arc of King County, we support individuals who are parents as part of our Supported Living Program, and we support them to help access the resources that provide the additional services they want as parents. We also strengthen their parenting skills when we are requested to do so.

I hope you enjoy this special article from one of our community members, and I hope you will consider sending us your story ideas for future blog posts and newsletters, too. 

Image

Why Do More People with Intellectual Disabilities Lose Custody of their Children?

In the U.S and other developed nations, there are laws in place that protect people with disabilities from discrimination. Often these include flat access to public buildings, accessible parking spaces, access to systems that help the person with a disability find work and the right to inclusive education facilities. Americans with disabilities are also now able to enjoy equal access to healthcare since medical insurance companies are no longer allowed to exclude pre-existing conditions from their policies. But there is one right that is universally ignored: the right to become a parent and raise children. Through the Universal Declaration on Human Rights, established in 1948 after the holocaust and other war crimes disgusted the world, people are supposed to have the right to found a family and to raise that family without negative interference from the state.

Clearly enshrined in article 16 of the declaration, one would assume that this right to procreate and enjoy the society of your own children was protected in law for all parents, whether they have a disability or not. Shockingly, this isn’t true. Although America was the first country to enact any rights at all for its citizen’s with disabilities through the Americans with Disabilities Act 1990, the act doesn’t include a section on disabled parenting and this is the case in other countries too. The UK’s Disability Discrimination Act of 2005 doesn’t even contain one paragraph on parenting. Simply put, people with intellectual and developmental disabilities (I/DD) all around the world don’t have any rights to be a parent, and more worryingly, if anyone of authority decides to question their parenting relationship, they don’t even have the automatic right to custody of their children.

One in 10 Children Has a Parent with a Disability

The laws intended to protect children from harm and neglect are increasingly being used to remove children from capable parents  who have disabilities under the assumption that people with I/DD are unfit to look after them. Despite the fact that one in 10 American children have a parent who is disabled, the overwhelming societal belief is that people with disabilities cannot or should not be parents. Although we are well into the 21st century, the notion of people who have disabilities  entering into romantic relationships remains taboo. The natural extension of those relationships – having children – is unthinkable to an able-dominated culture. Could this be the  reason that no legislation has been put in place to protect the parent-child bond in families with a disability?

Child protection policies permit social service departments or healthcare professionals to question a parent about their disability if they believe that it may impact their ability to care for the child. Furthermore, there is no limit to the amount of times a person may be questioned. The problem with this intervention is that parents with disabilities are generally thought of as inadequate caretakers for their children from the outset. They often have to prove that they are capable, rather than authorities assuming they are.  In essence, parents with disabilities are ‘guilty’ of neglect or incompetence until proven innocent, rather than the other way around. In some cases, authorities may offer assistance for a parent with a disability who doesn’t require any, rather than respecting that the person will ask if they need help. More frustrating however, is that some parents don’t get the chance to ask for help because their babies have been taken away directly  from the maternity ward on the basis of the parental diagnosis. This could be due to staff ignorance or it may simply be cheaper to adopt the child out rather than provide long-term support to a family with disabilities. Whatever the reason, it is frighteningly common.

For parents with intellectual disabilities, the problem is epidemic. Between 40-80% of those parents have their children taken away. Some agencies that are supposed to support these  families can make thing worseby focusing on their disabilities rather than looking at their strengths. They fail to understand that most people with disabilities are good at adapting because they find ways to work around their disability. Because of this ability to adapt, they are often very good at problem solving.

Measures that agencies may perceive as helpful or in the best interests of the children can end up being detrimental to the family. For instance, social workers may go beyond the responsibility of their job and interfere with the day–to-day living of such a family. Social workers do not accept parenting decisions  or they impose conditions that are not put on other parents. Parents with disabilities are pressured to prove themselves ‘worthy’ of parenthood – a stance which can put them through deep anxiety and depression.  This heavy-handed approach actually puts children at risk because it dissuades many parents who fear losing their children if they ask for help when they need it.

People with physical disabilities also get unfair treatment. Erika, who is blind, temporarily lost custody of her first-born daughter.She had breastfeeding difficulties and sought a nurse to help her. Instead of advising her on nursing her baby, the nurse reported her to child protective services because she was worried how a person who is blind would cope. The baby was put into foster care for almost two months while her distraught mother had to prove she was capable of looking after her. Although her daughter was eventually returned to her, she was robbed of the ability to breastfeed as her milk had dried up.

In another case, Joanna, a mother who has cerebral palsy, had a child protection case opened against her when she made the choice to homeschool her child. An increasing number of parents are choosing to homeschool because it is a legal educational option.  Despite this, the assertion was made that she was homeschooling her child so the child could ‘stay at home and care for her’. They made this assumption despite the fact that the mother had never received or needed any social assistance and had lived independently for her entire adult life. In her case, while the child in question was not removed from the home, it took attorney representation before the file was closed. Exercising free will is a fundamental part of decision-making in parenting – yet the choices parents make may not be accepted if they are deemed not competent, or their decisions may be unfairly attributed to the fact that they have a disability.

If you do not have a disability and think none of this could apply to you, you should think again. The same legal loopholes that allow children to be removed from their parents with disabilities are being used to take children from parents who become sick. Those with chronic fatigue syndrome or cancer may find that their child is placed in foster careif they assume the parent is too ill to care for them – even if that isn’t the case. Two thirds of states in America list disability and illness as reasons to remove a child from his parents in their child protection laws.

Alina, a New Yorker, lost custody of her children to her ex-husband after she got breast cancer.  They assumed he was the best parent to take care of the children because he was healthy She was denied a full-time relationship with her children before her death. The children lost what little time they had left with her and the chance to build more memories.

Amanda lost her daughter after caring for her since birth when she got severe osteoarthritis and needed a hip replacement. She was accused of abusing prescription painkillers by the child’s father, despite the fact that the treatment was needed and sanctioned by a doctor. After surgery, she fully recovered but she still was not allowed to have her daughter back.

In marital disputes and custody proceedings, parents with disabilities also have their parental rights terminated at much higher rates than the parent without a disability.

In 2014 the presumption needs to be that all parents no matter their diagnosis have the ability to parent their children and the support offered should be real, instead of designed to detect child neglect.  As people with disabilities are becoming more included in community life, the number of children being born to them is increasing and discrimination laws need to be updated to reflect this.

People who have a disability have as much right as any person to start a family. Anyone in support of promoting the legal rights of parents with disabilities should write to their congressman and ask for parenting to be covered under discrimination laws. Additionally, medical providers should help their patients with disabilities who want to become parents. Encourage your health care providers to consider the rights and needs of all of their patients starting families:

  • Make more time at obstetrician appointments to make sure the person understands
  • Repeat the information if necessary
  • Give information on pregnancy and birth that is easy to understand – flyers with larger, simply constructed writing and illustrations may be helpful. Some people also find DVD programs easier to absorb
  • The formation of pre-natal education classes for parents with a disability, or one-to-one education classes using role play so that parents can learn skills like diaper changing and feeding
  • Inclusion of a family member, partner or personal assistant so that the person is fully aware of any proposed care plan and can properly consent
  • A social worker can be assigned if needed to help the parents establish a parenting routine. This may be a single visit or a longer-term care plan for the family. This should be done with the aim of building on existing skills rather than hunting for potential problems
  • Parents should have access to large print, easy to read childcare booklets and highly visual posters
  • Adaptive baby equipment can be bought for parents with physical disability

Position of The Arc of US: http://www.thearc.org/page.aspx?pid=2375

Additional Sources:

Universal Declaration of Human Rights, U.S Department of State, accessed April 15, 2014, http://www.state.gov/j/drl/rls/irf/2008/108544.htm

Protecting the Rights of Parents with Disabilities, American Psychological Association, accessed April 15, 2014, https://www.apa.org/monitor/2013/07-08/disabilities.aspx

Why Parents with Disabilities are losing Custody of their Kids, Time, accessed April 15, 2014, http://healthland.time.com/2012/11/27/why-parents-with-disabilities-are-losing-custody-of-their-kids/

Americans with Disabilities Act 1990, accessed April 15, 2014, http://www.ada.gov/pubs/adastatute08.htm

Parents with Learning Difficulties, Child Protection and the Courts, accessed April 15, 2014, http://disability-studies.leeds.ac.uk/files/library/Booth-parents-with-lea-diff.pdf

Obsessive Compulsive Disorder, PsychGuides, accessed April 15, 2014,   http://www.psychguides.com/guides/ocd-obsessive-compulsive-disorder/

Disabled Mothers, Brunswick Books, accessed April 15, 2014, http://brunswickbooks.ca/Disabled-Mothers/

Products for Parents with Disabilities, Wheelchair Net, accessed April 2014, http://www.wheelchairnet.org/WCN_ProdServ/Docs/TeamRehab/RR_97/9706art2.PDF

Parents with Learning Disabilities, Best Beginnings, accessed April 15, 2014 http://www.bestbeginnings.org.uk/parents-with-learning-disabilities

Andrew Solomon, ’Far from the Tree, Parents, Children and the Search for Identity’, Scribner Book Company, 2013, accessed April 15, 2014, http://www.barnesandnoble.com/w/far-from-the-tree-andrew-solomon/1111305531

Who Influenced You?

Early life events can exert a powerful influence on both the pattern of brain architecture and behavioral development. We change — for better or worse. Now imagine if everyone in our society had early, positive experiences with people who have disabilities. How different the world would be!  

For those of us who are related to someone with a disability, or grew up as friends with someone with Downs syndrome or autism, we know that our lives were impacted by that experience. At our recent luncheon, each of the speakers shared their experience of how being close to someone with a disability changed the direction of their lives in some way.  

Sarah Cronk founded The Sparkle Effect because of her brother; Lauren Bertagna’s work as a young professional influenced her lifelong work in the disabilities field; Andi Smith, from the Governor’s office, spoke about her uncle; keynote speaker Omar Rivas told stories about several friends with disabilities that he cares deeply about; and of course, Dennis Bounds talked about his son.

For me, it was my cousin. He lived a full life, went to college, became a lawyer, and had a beautiful family. He also happened to have cerebral palsy. What matters to me was the full life, college, lawyer, and beautiful family part.

Today, thanks to greater inclusion at school, at work, and in our community, people with disabilities are making an even bigger impact on the lives of people around them. My kids have grown up knowing people with disabilities through my work and because of more inclusive classrooms and community activities.

When my son Sam went off to college, he pledged with a fraternity whose mission is to raise awareness about people with disabilities. Later this month, Sam will embark on a cross-country bicycle journey with several of his fraternity brothers to raise awareness and funds for people with disabilities. (Our board president Joshua Brothers also had this experience, and it influenced his decision to practice disability law!)

I am so proud that The Arc of King County is hosting a Friendship Visit at the PUSH America kick-off from Seattle to D.C. later this month. As I watch my son and his cohort of fraternity brothers push off from the Olympic Sculpture Park, I’ll be witnessing another generation of young men whose opinions, beliefs, and lives will be changed because of this experience.

Our advocacy work over the years has made a tangible difference in how people treat people with disabilities. As we continue our work, I hope you too will take a moment to realize how different the next generation will be because of the people they know, love, and grow up with today. Inclusion makes a difference.

 

Image