FACT Oregon

Empowering families experiencing disability.

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Sex Ed for Children Experiencing Disability

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January 13, 2017

By Loreta Boskovic, Communication Specialist

I think we can all agree that our children experiencing disability are going to grow older, reach puberty, and push their way on through to adulthood. The question is, are YOU ready for this stage? Have YOU given thought to how your child is going to learn about their changing body and handle their attraction to others?

Presuming competence in our children means that we align ourselves with the belief that our children, given the right supports and information, can achieve a sense of self-identity and advocacy that is right for them. For ex., this can mean taking part (to whatever degree possible) in the IEP process; determining the activities in which they want to take part in the community; identifying employment that is meaningful and relevant to their interests and skills; and forming relationships with others that are deep, meaningful, and intimate.

This can be hard! Let’s face it: presuming competence often means that parents have to identify the learning steps that support a person getting from Point A to B in ways that parents of typically developing children don’t have to face. When it comes to human sexuality, that spotlight can center on questions that can be challenging for parents to answer:

  • How comfortable am I with knowing that my child will experience sexual desire?
  • Do I think my child will be prepared emotionally and physically to have a healthy sexual relationship when the time is right?
  • Can I support my child’s sexual orientation or gender identity if it differs from my own?

If you’re already thinking about these questions, you’re not alone. From FACT Oregon’s Facebook page:

Wondering if you are aware of any school districts who have developed curriculum for special education classrooms and are presenting information to students regarding Senate Bill 856 which requires developmentally appropriate education of all students (K-12) regarding prevention and understanding of sexual abuse. [Read the full post here.]

We contacted Oregon Department of Education [ODE] to get more information about SB 856. While focused on sexual abuse prevention, ODE’s approach to this bill is that sexual health promotion is sexual violence prevention. (There’s even a really cool Venn diagram explaining its approach.) This builds upon the existing human sexuality education that ODE has approved for Oregon students which is medically accurate, non-shaming, age appropriate, inclusive, and provided to all students, including those who receive special education services. You can read more about ODE’s sexual education information here.

Something to keep in mind: individual school districts are responsible for implementing sexual education curriculum, and whatever they choose does not need to be approved by ODE. If you have a concern, question, or comment about your child’s sexual education curriculum, you can contact Ely Sanders, MPA, ODE’s Sexual Health and School Health Educator, at [email protected] or (503) 947-5738.

If you want even more proof that sex ed is important for children experiencing disability, look no further than the following:

  • “Children with neurodevelopmental disabilities are 20 times more likely to experience early pubertal changes” (American Academy of Pediatrics, Sexuality of Children and Adolescents With Developmental Disabilities, 2005).
  • “Historically, this population has not been afforded the same sexual rights and freedom as those in the general population, despite the same human need for love, affection, and fulfilling interpersonal relationships. Restrictions on sexual activity have been based on the false and often contradictory belief that persons with developmental disabilities are either asexual or sexually aggressive, in the case of males; promiscuous, in the case of females; or too “childlike” to maintain healthy intimate relationships of their own” (Oregon Health Authority, How Developmental Disabilities Impact the Sexual Health of Young Adults, 2011).
  • “Children with disabilities are 2.9 times more likely than children without disabilities to be sexually abused. Children with intellectual and mental health disabilities appear to be the most at risk, with 4.6 times the risk of sexual abuse as their peers without disabilities” (Vera institute of Justice’s Center on Victimization and Safety, Sexual Abuse of Children with Disabilities: A National Snapshot, March 2013).

When we presume competence in our children experiencing disability, this does not stop at the doorstep of their sexuality. If anything, data shows that parents and caregivers need to be aware of the ways in which their child’s developing sexuality can be supported and expressed in a safe, appropriate, and respectful way. Children experiencing disability need to have access to information about preventing sexually transmitted diseases and sexual abuse; learning about menstruation and pregnancy; and yes, about sexual pleasure. This information can and should be delivered as specially designed instruction if that is what’s appropriate for your student.

Is your student getting access to sex ed? Do you feel like you have the information you need to support your child? FACT Oregon invites you to attend “Let’s Talk About Sex” on Thursday, February 2. This will be a workshop with Leslie Walker-Hirsch, IMED, FAAID, national speaker, author of “The Facts of Life …and More,” and co-creator of the Circles® Curriculum Series. She will be covering the Circles® Curriculum series, a multi-media teaching curriculum designed especially for students receiving special education.

 

What are “Dear Colleague” Letters, and Why are They Important?

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December 21, 2016

By Ava Bartley, Advocacy and Engagement Director

Chances are you’ve heard about “Dear Colleague” letters at some point, but if you’re still not sure what they are, you’re probably not alone.

A “Dear Colleague” letter is a guidance document issued by a federal agency that helps explain and interpret existing laws and regulations. About 10 years ago, the Federal Office of Management and Budget issued the “Final Bulletin for Agency Good Guidance Practices,” which told agencies what kinds of additional policy guidance they could issue and explained the process they needed to follow to issue it.

Do “Dear Colleague” letters have the same legal force as federal laws or regulations? No, they are non-binding. But should you pay attention to them? Absolutely. Why? Because guidance documents like “Dear Colleague” letters are basically policy statements that give helpful guidance in interpreting existing laws and rules that can be extremely complex and hard to understand. They’re also a good indication of the position agencies will take when enforcing their own laws and rules.

As laws become more complex, agencies seem to be turning to this form of guidance more often to help interpret existing laws and rules.

The following are brief descriptions of just a few of the “Dear Colleague” letters relating to special education and the Individuals with Disabilities Education Act [IDEA] that have been issued by the U.S. Department of Education in the last year or so:

IDEA Applies to Children Enrolled in Virtual School – August 5, 2016

This document describes the IDEA’s requirements that local education agencies must meet in order to ensure they are providing a free and appropriate public education [FAPE] to children experiencing disability in virtual schools.

Behavioral Supports for Students with Disabilities – August 1, 2016

Do you have a student who experiences behaviors in the classroom because of their disability, including those that result in suspensions or other disciplinary measures? This one may be meaningful to you. It states that the behavior needs need to be included in the list of needs an IEP team has to meet, and the IEP team must consider using strategies like positive behavioral interventions [PBI] and supports in order to ensure a child receives FAPE.

IEP Goals for Children with Disabilities Must Align with State Grade-Level Content Standards – November 16, 2015

With a stated purpose of ensuring all children with disabilities are held to high standards and high expectations, this Dear Colleague letter clarifies that IEP’s for children experiencing disabilities have to align with state academic content standards for the child’s current grade and must include specially designed instruction and enable the child to have access to – and make progress in – the general education curriculum.

There have also been several “Dear Colleague” letters and other guidance documents issued recently about the Every Student Succeeds Act [ESSA], among them the following:

Stakeholder Engagement in Developing State Plans – June 23, 2016:

This “Dear Colleague” letter stresses the importance of stakeholder engagement in the development of state plans to implement the ESSA, and identifies several strategies states could use to meaningfully engage a diverse group of stakeholders in the process.

This one is especially relevant in Oregon right now because Oregon is in the middle of its process for developing its ESSA State Plan. For more information, go to the Oregon Department of Education ESSA web page. You can review a draft framework of Oregon’s ESSA State Plan and take a survey to provide your valuable input. (FYI: This survey closes January 16, 2017!)

To learn more about advocacy and ways parents can get involved in the legislative process, join us for the webinar, FACT Oregon Presents Legislative Advocacy 101 with the GO! Project on February 9, 2017.

Assistive Technology in a Computer-dependent World

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December 17, 2016

by Loreta Boskovic, Communication Specialist

“What sort of life would it be like in social terms if our whole life is built around computers? Will we become a computer-dependent society?”

– “In some ways, but they also enrich our society because it’ll make it possible to live anywhere we like…”

– From the introductory credits to “Steve Jobs” (2015), about the co-founder of Apple, Inc.

Assistive technology [AT] is revolutionizing the way our children experiencing disability are making their way through the world. Yet like the father in the scene above, it’s challenging to imagine the realm of possibilities that await our children – and our children’s children – thanks to advances in computer technology.

After all, consider that only 6 years ago, the first iPad was released to the public. Now this technology has made its way into classrooms, tallies your order at the coffeeshop, and does everything but vacuum your living room floor. Thanks to this portable device, there are an ever-increasing set of communication apps for non- and low-speaking people; ASL apps to facilitate sign language; and apps to help people with visual impairments see. 3D printing, eye tracking software, driverless cars… AT is truly revolutionary and one of the strongest proponents of offering equitable access to the community for people experiencing disability.

So why does it seem so special?

A number of years ago at a training, a FACT staff person was talking with a parent who shared how her 70 year-old father told her she should be focusing her attention on teaching her young son to write. “How’s he ever going to have a job if he can’t use a pen?” Try as she might, she couldn’t convince her father that this reliance on manual dexterity was not a dealbreaker anymore (and an hour spent in any high school study hall would quickly showcase how easily young people communicate using only their thumbs). AT could make communication possible for her child – it was just going to look different. (If you need another example of overcoming the seemingly impossible, check out this video of Nick, a young entrepreneur who owns his own lawn care business. The  part showing his adaptive van is worth its weight in gold.)

AT is often perceived as complicated, high-priced technology, programs, or gear that is specially designed for and used by people with disabilities. Yet as disability advocate Kathie Snow often shares in her presentations, many of us rely on AT, and don’t realize it. Consider its definition from the IDEA, Sec. 602(1):

The term `assistive technology device’ means any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of a child with a disability.

So the glasses your 4th grader wears; the crutches your friend had to use after a bad fall; the motorized shopping cart your mom relies on at the store; the large print mystery books you enjoy reading – these are all AT.

If we can get over the idea that AT is only a special service supporting certain students, it will broaden its accessibility considerably. Instead, let’s regard it as anything that helps any person experiencing disability see, hear, communicate, play, read, write, work with numbers, use a computer, or be mobile. Through this lens, the possibilities are endless.

FACT worked with Oregon Department of Education to create a video that showcases the ways AT can benefit a student, ranging from low- to high-tech strategies. Take a look and tell us what you think in the comments below!

Screen shot for Assistive Technology: Creating Opportunities video

The Normalcy That is Our Lives

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November 27, 2016

By Loreta Boskovic, Information Specialist

The other night, I went out to see a concert at a local punk rock venue which is known for its small stage and loud sound system. As people crowded the hall before the final band, I could see a group of people craning their necks to scope out an open spot right next to the stage, only to discover that someone who relied on a wheelchair was sitting there. The refreshing thing was, no one made a big deal about it – the spot wasn’t free, so they moved on. The fact that the person was in a wheelchair seemed to attract no extra attention, no stupid comments, no resentment at all. I found I’d been holding my breath, waiting to call someone out for saying something offensive… Mama Bear, much?

I credit my reaction to the changing state of disability visibility. So often our kids are the only people we see around us who experience disability; they are a little island in a sea of “normal people” or floating in an pool of “typical peers.” They may stick out because of a physical feature, or the way they behave. And the pressure can be unbearable. For example, my autistic 15-year old relies on a letterboard to communicate. More than once, he has written that he wished he could control his body’s “stims” when he’s out in public just so people would stop staring at him. He knows he’s different – he wouldn’t change a thing about being autistic (and neither would I!) – but a lot of the time, he would love to blend into the rhythm of the store, community center, or concert like so many other people do.

My family goes about its daily life in our community, knowing that we look a little different, and that makes us more visible. Thanks to a growing awareness about diversity and equity, I consider that reality our small contribution to changing what people think of as “normal” and adding our unique beat to the rhythm of life around us.

Disability visibility is growing; but if I had to compare it to a stage, I’d say we made it out of grade school (thanks to the IDEA, ADA, and other key legislative milestones that raised us up), and now we’re in that awkward, gawky middle school phase, trying to get it right but often falling way short. For example, my personal pet peeve is new stories about people experiencing disability doing things that we take for granted. Why should it be news that two teens with cerebral palsy want to go to prom? Likewise, we’re still seeing press releases announcing that companies like Target are featuring children experiencing disability in its TV commercials, as if we should give them a pat on the back for acknowledging that our kids exist. And Hollywood has some work to do, as it rarely features real people experiencing disability, and so often, their portrayals are inaccurate or romanticized.

Personally, I find I appreciate real, honest, human portrayals of people experiencing disability, but especially when they come from self-advocates. Take cartoonist John Callahan, who until his death could be seen roaming the streets of downtown Portland in his wheelchair. His often-controversial approach to discussing disability was personal and political: “My only compass for whether I’ve gone too far is the reaction I get from people in wheelchairs, or with hooks for hands. Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That’s what is truly detestable.”

I am eager to get to the stage where a person’s disability is not the first thing we notice about them. Imagine: no more stories about people “overcoming” their disability to achieve great [read: able-bodied] things; no more disabled people being “inspirations” to [non-disabled] people. And if and when we *do* notice someone’s disability, it’s a natural part of their personality, like what makes them laugh, how they treat others, and the way they lead their life. If that crowd of punk rockers is any barometer, maybe we’re slowly moving closer to this new normalcy.

#ExpandingAwareness

Vote!

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a show of hands raised with the word VOTE in the blue backgroundNovember 1, 2016

Next Tuesday, November 8, is election day, and never before has it been so important for people with disabilities and their loved ones to make their voices heard.

In this election cycle, the issue of disability has barely made it into the national discourse. It has not been raised in any of the debates; except for outrage over one presidential candidate’s alleged depiction of a person experiencing disability, the concerns and issues facing 56.7 MILLION Americans have gone largely unnoticed.

People with disabilities are the United States’ largest minority population. What are some our issues and concerns?

  • Equal access to general education: 6 out of every 10 school-age students served under the IDEA spend at least 80% of their day in general education. But what about the thousands of students who continue to be segregated in self-contained classrooms or schools with little access to a general education curriculum or typical peers? In addition, students with intellectual disabilities or multiple disabilities are least likely to spend the majority of their time in inclusive environments (Disability Scoop, February 2, 2016).
  • Graduation rates: Across the United States, 63% of students with disabilities graduated from high school in 2014 — a rate of graduation roughly 20% lower than the national average (Huffington Post, Jan 14, 2016).
  • Employment: In the last decade, only 41% of people age 21 to 64 with disabilities were employed, compared to 79% of those without a disability (US Census Bureau’s report, “Americans with Disabilities: 2010).
  • Independent living: Statistics vary by disability, but many people experiencing disability are not able to live independently in the community without suitable supports. For example, only about 17% of young adults with autism ages 21 to 25 have ever lived independently (Disability Scoop, September 3, 2013). Unbelievably, young people ages 31 to 64 make up 14% of the nursing home population (Oregon Public Broadcasting, December 9, 2010), and a Senate health committee report found that “a majority of states were using the more expedient and less costly option of sending them to nursing homes, many of which had empty beds and were eager for the business” (The Fiscal Times, May 3, 2016).
  • Poverty: Among people age 15 to 64 with severe disabilities, 10.8% experienced persistent poverty, compared to 3.8% of those with no disability (US Census).
  • Social services: Less than a decade ago, Federal budget and Census data showed that 91% of benefit dollars went to people 65 and over, the seriously disabled, and members of working households (Center on Budget and Policy Priorities, 2012). Cuts to services our families often rely on like Social Security, Medicaid/Medicare, SNAP, and CHIP can have devastating effects. For families that rely on social services to provide attendant care for their adult children, state fiscal priorities can mean the difference between a person living independently or having to live in a nursing home.

These are but a few of the areas that affect the lives of families experiencing disability in very personal ways. If any of them speak to your family’s circumstances or include areas that you want to see changed, then:

  1. Research the candidates’ positions on disability related topics. Resources like the nonpartisan Respectability Report’s Oregon Voter Guide and Disability Rights Oregon’s Easy Voting Guide are great places to start.
  2. Confirm that you are a registered voter in Oregon, and that you or your loved one can access your right to vote. Oregon has an alternate format ballot that is available for people experiencing disability that allows them to access the ballot on a screen reader/tablet, use voice generated text tools, increase font size, and accommodate a person’s limited range of mobility.
  3. VOTE!

 

FACT Oregon’s “Don’t Judge a Book by Its Cover” 2017 Calendar

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October 15, 2016

Click here to order FACT Oregon’s 2017 calendar, “Don’t Judge a Book by Its Cover” – only $25 (including shipping)!

Young teen sitting on motorcycle with biker behind her giving a thumbs upThis project was born from the reality people experiencing disability face: being judged by their appearances, leading others to mistakenly presume their abilities, interests, and personalities. FACT wanted to break this stereotype by photographing people with disabilities posing with another often-misjudged population: motorcycle club members!

This calendar is perfect for your family, extended family, school staff, and professionals who work with people experiencing disability. Raise disability awareness this holiday season with  FACT Oregon’s “Don’t Judge a Book by Its Cover” calendar!

= PREVIEW THE CALENDAR HERE =

Why is this calendar important?

  • Calendars do more than give our lives structure; they give us a beautiful image to focus on as we start our day. This calendar will help your family, friends, school staff, and colleagues start the day with the knowledge that they can make a difference in their language, attitude, and demeanor towards all the people they encounter that day.
  • This calendar is a visual reminder that disability is a natural part of the human experience and a wonderful aspect of human diversity that does not call for labeling or prejudging.
  • Calendars have always been a part of people’s day-to-day activities. However, these days it seems like we need them more than ever to finetune our busy lives and choreograph our dynamic schedules.
Young boy with bandanna and glasses gripping hands with muscular biker with beard and tattoos

We are grateful to Ben Wood Photography and Anna’s Photography who donated their time and services for this one-of-a-kind promotion. We’d also like to thank Team Latus Harley-Davidson & Triumph for providing the Harley bikes and apparel, and local motorcycle enthusiasts along with Portland Beard Company for posing with families.

Raise disability awareness this holiday season with FACT Oregon’s “Don’t Judge a Book by Its Cover” calendar!

FACT Oregon
2475 SE Ladd Ave. Suite 430
Portland, OR 97214

(503) 786-6082 or 1 (888)-988-3228