In March 2011, I was lucky to be among a group of ~30 people who convened in Racine WI to discuss a national agenda for supporting families with a member with intellectual and developmental disabilities. Why? The role of the family is central to individuals with intellectual and developmental disabilities across the lifespan. More so than ever before, the family provides medical, behavioral, financial, and other daily supports — these roles are vital and often policy and practises do not recognize them, support them, fund them, etc. As families become the singular central support unit, policy has to emerge to recognize the validity of their position and families have to become equal partners to the policy dialogue.
I’ve attached the full document from this event. It is worthwhile reading. In particular the statistics are highly relevant and we should really consider how this impacts policy on a go forward basis
- In the US there are more than 4.7 million citizens with intellectual and developmental disabilities.
- More than 75% of those are living in the community without formal disability services, relying on families for various levels of support
- Of the 25% receiving services, over 56% live with their families (in some states that is 80%)
- 28% of children with disabilities live below federal poverty levels (compared to 16% without disabilities)
- Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities
- Over 58% of parents/caregivers spend more than 40 hours a week providing support for their loved ones (beyond typical care) — 40% spend more than 80 hours a week.
- Long waiting lists for services and the increased lifespan of individuals with I/DD have contributed to a growing number of individuals with IDD in households where the primary caregivers are themselves aging.
The systems of old evolved out of an institutional model. The systems of today have to be designed to include a focus on models supporting families through the lifespan of their loved one.
“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society.” The Developmental Disabilities Assistance and Bill of Rights Act, 2000
I encourage you to read the full document and start a conversation: SUPPORTING FAMILIES Wingspread
My mother was my role model. Often times this is the case for daughters. But especially for me. I tagged along everywhere with my mom. I was the last one home and my mother finally had some time to get out of the house (after raising 10 kids) and she bundled me up and I went along with her. I remember going to the Board of Education. City Hall. Harrisburg. Washington DC. Picketing. Marching. Meeting. My first school room was a pilot school room started by my mother. A trip to the grocery store also included a trip to other mothers’ houses — where my mother brought them groceries. A walk to the corner was taking the policeman a cup of coffee. My mother was civic minded. Involved. And a visionary leader. When it came to her passion — equal rights — she was unequaled in her foresight, ability to engage and encourage. She was understanding and hope. In short, she was an astonishing woman. I aspire to be a fraction of what she was. I have a long way to go.
When it comes to my brother David, my mother was my role model. To be good in my job as his advocate, I tried to do what I thought she would do. What she would have wanted. And this has taken me very far.
But in reframing how I see and treat my brother and subsequently reframing how others see and treat him, my current role models are self advocates I have met.
Let me give an example. My brother David requires foods that have been very finely chopped. When we go out (conventions, other people’s houses, meetings, restaurants) they do not typically have finely chopped food. Or soft moist food. His food comes. (Sometimes i ask the kitchen to chop it but then it comes back not chopped enough anyway) So, the food comes, I lean over and chop it up. I taste it to see if it’s too hot. I take food from my plate and give it to him. I never thought anything of this. Sharing food, plates. That’s what we do in our family. (I remind you, we had 10 kids and a lot happened over food!) Anyway, my friend was sitting with us at one event. She happens to have Cerebral Palsy (as does my brother). She said, hey Kate, you want to chop up my food next? You want to taste it? And I looked at her and she was totally jerking my chain. I had to step back and look at myself and say, hey what am I doing? Would I do this to her? If she wanted me to cut up her chicken, I would but I wouldn’t do it like I was feeding a baby. And that’s what I was doing with David. I acknowledge it takes a while to break a habit you’ve had for 40 years. But it was a self advocate who helped me take a step back and look at myself and start the process.
Self advocates are teaching me the presumption of communications. That everyone “talks” and we have to learn how to listen better. That its okay to ask a person how best to communicate with them. Self advocates are helping me be more patient which is hard to do in a world of 30 second sound bytes. Self advocates remind me daily to be inclusive — meaning to actively engage everyone in the conversation and not just allow them a seat at the table. Another friend stops me from saying “hon” and consistently reminds me “I have a name, use it.” and I noticed that sometimes staff around my brother don’t use his name like he is an interchangeable object du jour and I so get it! And in a new field where everyone seems to hug, its my friend James (he has said i can use his name) who reminded me just yesterday that many individuals with developmental disabilities have been victims of sexual abuse and we need to think twice about all this hugging. In fact, it was James and his reminder that pushed me to write this blog! (Thanks James)
Now I want to confess that all the things I’ve been learning require a change in my behaviors. And that takes time. But, I’m working on it. I’m working on it. So, my friends, keep telling me, keep sharing, keep showing. I’ll get there.
Parents have done a great job making room for their children. But it’s their children who are showing me that they are not children for life. Self advocates, thank you.
To know a man, walk a mile in his shoes? We cannot truly walk in the shoes of self advocates. We cannot. But we can sit next to them as they recount their story. Listen and watch and learn. And allow their experience to change our path. A journey starts with one step and I am on the road!
It’s called a movement when it’s moving 🙂 Here we go!
Yours in Community,
Pleased to announce Dave and Kate to host Mini Course/Lecture Series on Disabilities Monday March 28, 2011. Look forward to seeing you there!
Register now for this informative and valuable presentation.
About the Event
A family-oriented discussion about social networks for individuals with intellectual and developmental disabilities. Individuals with intellectual disabilities, family members, professionals, and allies are welcome.
Kate and David Fialkowski will share their journey from “typical” siblings to when one sibling takes on the role of caregiver or overseer of the other sibling. This frank and sensitive discussion will include the transition from parent-led support to sibling-led support and navigating the process and outcomes of that role change.
During the afternoon, a select panel will discuss the development and leverage of the social network. Everyone is encouraged to attend including “Person-Centered Circles.” Questions and open sharing of ideas from the audience will be encouraged.
Kathryn Fialkowski and her brother David grew up in inner-city Philadelphia. Kate has spent her life advocating for disability rights and inclusion. She and her family have led grassroots activism in the right to education, community living, and employment for individuals with developmental disabilities. Kate is currently a Joseph P. Kennedy Jr. Public Policy Fellow placed at the U.S. Department of Health and Human Services Administration on Developmental Disabilities (ADD) in Washington, DC, working on grassroots strategic planning and self-advocacy organization.
Registration and Location
2 part session
(with lunch on your own)
Part I: 10 AM – 11:30 PM
Part II: 1 PM – 2:30 PM
Registration begins at 9 AM.
Event is FREE. Registration required.
* You MUST register NO LATER THAN March 11 if you are requesting accommodations (Braille, Sign Language Interpreter, etc.).
Register online OR call 215-204-1356 (voice/TTY) and we will send you a registration form.
Temple University Main Campus
1755 N. 13th Street / Room 200A
Philadelphia, PA 19122
My brother, David is a habitual watcher. He was always this way. As children, I would sit and play and he would sit and watch me play. He was never interested in fictitious, symbolic, or representative things. Only real people, real interactions.
Over Christmas, I introduced David to the iPad. David and I played Virtuoso piano together. To sit and play piano together, this was really something. Through tapping on the screen, having tones emit, David found a way to interact with me and I with him. And each time I think about that day I think “Forty-some years, and that was the first time we had a “back and forth” conversation.”
Once I handed David the iPad, we tried a variety of “aps” or applications. Movies, iTunes, games, piano, AAC communications. Our roles reversed. I was the observer and he, the primary doer. David engaged with the surface of the iPad easily.
Historically, there have been many barriers to using AAC devices: (Source) This includes policy, practice, knowledge, skill, and access barriers. My brother, David, was impacted by all these barriers. Throughout his school years, barriers existed suggesting that his intellectual disability precluded the need for him to have AAC. The degree of fine motor skills precluded the capability to have AAC. The cost was prohibitive for our family to trial, and forget about buying (when the policy barriers precluded it). It was these same barriers that eventually made David a prime candidate for “Facilitated Communications.” Facilitated communications was considered a breakthrough method of communications for individuals who did not speak verbally. I was living out of the area at the time and I remember when they called me and put David on the phone and “he” said “I love you.” I was at work and cried like a baby. And then I thought, a) hey I have 8 other siblings and I know “us” — the first thing all of us do is tell a joke–we do not tell emotions! and b) who’s pressing the buttons?
So back to the iPad. Who’s pressing the buttons? No keyboards, no pens, no pointers, only a beautiful surface area. No requirements for fine motor skills. Can’t tap? Slide! Can’t use a single finger? Use your hand and swipe! ). Graphics? Traditional symbolic pictures sure, if you want them. But real pictures or even videos can be used instead! Audio? Synthesized voice? Sure, if you want it. But how ’bout real voice? Mom’s who record for their sons — you can “bend the pitch” so that mom’s voice now sounds like a male voice — you can record and yet give your child their own voice. It has an easy touch, crystal clear visuals, and terrific audio. And David can hold it in his own hands. It is light, portable. He can hold it. It can rest on the table. It can be his. For the first time AAC can be small enough and customizable enough to be “personal.” And the myriad of aps means that this device can be truly an external extension of David’s unique self. And still “standard” enough for others to understand and interact with him without a PhD!
I admit that I’m a steadfast zealot. Why?
Yesterday, my sister Mary and I had an iPad meeting with David’s provider. 8 people + David, Mary, and I. There were several people in the room who had not been present for the previous discussion and so, although David was taking a break out of the room, we decided to review the background for the meeting. I explained that Mary and I had thoughtfully loaded applications on the iPad that were specific to David, his potential likes (we all get bored or change our minds), and also specific to the way he uses his hands. For example, every ap had a very large surface area and therefore did not require finger pointing precision. Full-hand gestures would work equally well. If David were to place his hand on the screen, a response would happen. And the screen would also pick up micro-gestures: small, almost invisible movements in David’s hands. These micro-gestures might come from small twitches or they may also be David’s reaction and engagement with his environment. Also, through the applications — even non AAC aps — David could make choices about what he likes and doesn’t like (self determination!) and communicate that to you!
We sent around Koi Pond for everyone in the room to touch and feel. Touch the screen and “splash!” it is as if you traipsed your hand through the water of a pond. Around the table it went” Splish-splashing all along the way. David returned to the room just as the iPad came back around. I put the iPad in front of David and explained the koi pond. David had not seen Koi Pond before. I traipsed my fingers on the screen: splish-splash. I gently placed his hand on the screen (splash) and on top of his hand I tapped my fingers. I tapped my fingers on the screen: splish-splash. I left him and continued talking. David sat there. His hands did not appear to be moving and yet we heard quite a volley of splishing and splashing. Micro-gestures! Eyebrows raised all around the room (including me and Mary!)
Another application around the table: Pocket Drums. Thumping, bonging, Binging all around the room. Back to David. David had not seen Pocket Drums before. I tap the screen: Thump, Thump, Bing!. I place his hand on the screen: Thimp-thump. I tap the screen again: Thump, Thump, Bing! and leave him alone. We continue talking. Micro-gestures. Thump…. Thump…. Thump…. David smiles. He lifted his left pointer finger high in the air and dropped it. THUMP! He smiled. Everyone stops talking and watches David. He does it again repeatedly. THUMP THUMP THUMP. He laughs. He starts tapping all his fingers — individually! Thump, Thimp, Bing, Bong! David is laughing out loud and brings his other hand over and is playing drums. He is laughing, smiling, shaking his head — David LOVES it. And the room bursts out in joyous laughter.
We all calm down and keep talking. I pull out virtuoso piano. It can play a duet — a keyboard on each side of the screen. Something David and I had enjoyed doing before. I put it down in front of David. No one is talking. Everyone is watching. I tap C, I put Davids hand on the keyboard. F. C chord badly played by Katy. David hands move. Notes play and then he is agitated. He is shaking his head. Then his body. Then he starts yelling. David is one unhappy unhappy man! “David,” I say, “this is simple, you don’t like it so we can just push it away.” I push it away. He lifts his hands off and looks at it. Gives it a little push. He looks up at me, smiles, and relaxes. Everyone around the room has an “Oh” face.
That’s what I’m TALKING about: COMMUNICATIONS. Self-Determination, we have lift off!
Buy it! Buy TWO. Get on board the iPad train buy one for your child, family member AND one for a friend. It will be worth every penny you saved up. Get involved, get your school involved, get your provider involved. And, let’s get Apple involved!!!
Yours in community,
Yesterday I read a blog posting about a recent meeting re Autism and in particular around a group’s debate of using tracking devices. An overview of the situation discussed:
“An incredibly brave Mom, spoke so eloquently about her child’s death due to wandering. Shelia spoke for so many of us when she described how quickly an ASD child can disappear. Her son, like mine, had no awareness of danger and almost no safety instincts. To make matters worse, nonverbal ASD children are highly impulsive and cannot respond when searchers are calling their names. urged the committee to make safety an IACC priority — particularly by providing interested families with potential life saving track devices and to aid in the support and training of first responders, teachers and other community service providers.”
A couple of notes
- GPS tracking devices are readily available
- This request is for the government to pay for the tracking devices
- This could apply to adults as well as children
First, let’s talk about children. A parent can, today, purchase a GPS tracking device (a watch, an amulet, etc) to be worn by their child. Why? According to the US Department of Justice, 797,500 children (<18) were reported missing in a one year period of time, resulting in an average of 2,185 children reported missing every day! Should you get one of these devices? Perhaps. If you want one, it is a viable purchase. These devices are reasonably affordable. If you can afford an Xbox, Wii, Playstation, iPhone or other technological sensation you can afford one of these devices with the monthly payment plan. I’ve read that one of the best on the market is Amber Alerts. It includes an emergency button for the child to use (works also if there is a PA with the child and they need emergency help). It also includes online tracking ~$180 for he product and $20/month for the tracking service. With GPS devices, you can know where your child goes after school. You can know how fast they were driving in the car. It is a safety device as well as a feedback mechanism. As a parent, you have a right to know where your children are.
Now let’s switch gears. How bout when your children are adults? Should I get a GPS tracker for my brother, David? David is 48 years old. I’ve already introduced you to David. David has many wonderful qualities but an appreciation of danger is not one of them. He communicates in different ways than most of us and if you call out to him, he will not call back. Is it possible for him to walk into traffic? Yes. Will a tracker stop him from taking that step? No. David relies on staff support for much of his daily living. They should prevent him from walking into traffic (right?). Well, let’s talk about the staff. there is the risk of neglect. How long did he sit in one place in the house? Or a car? Is he being driven all over the place? Or no place? Could a GPS could provide all kinds of information/feedback? Yes. So, should I get a GPS tracker for my brother? I mean, the technology is there. Not only GPS but once you go there –technology providing feedback — you have to also consider that remote monitoring devices (video cameras, web access) are also really cheap now too. These cameras can even “launch” when they see motion detected. I could watch David at home and also use the GPS tracker to ‘watch’ him out of the house. Since all of this is available, if I don’t collect all the available information am I delinquent on my oversight responsibilities? What about David’s provider? Should they be tracking him their staff?
These issues are pertinent. They apply not only to David but also to those of you with elderly parents perhaps suffering dementia. Remote monitoring? Remote tracking? They could really ease your mind. I’ve really thought hard about this and then I realized the real question at the heart of this is:
Does the fact that a person has intellectual and/or physical disabilities, mean that we can deprive him of his civil liberties in the name of “safety”?
Let’s go to the Constitution. The Fourth Amendment explicitly gives a constitutional right to privacy:
“The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no warrants shall issue, but upon probable cause, supported by oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized.”
Then there’s the Fourteenth Amendment:
“Section 1. All persons born or naturalized in the United States and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.”
Should we amend the amendments and add a clause that says “except when we know better, or except when the person has intellectual or developmental or physical disabilities?”
In the end, I acknowledge that we all have individual circumstances and I do not judge those who do what they feel that we must do. Only YOU can know the personal situation you are operating within. Even still, I would recommend that there are some questions to ask before you go there:
- Where will you draw the line? And where should the government draw the line. They may be two different things.
- Are we prepared to go back to the days of targeting individuals with disabilities and saying they do not deserve the same civil rights? This is how we justified institutionalization: for their safety. Or was it for our safety?
- Which leads me to the next question who are we really protecting? “him” or “me/us”? (is it so David is safer or so that I feel better?)
- Are we really prepared to say that the government can support tracking of individuals who have no criminal records? How ’bout ones who have records but there is no warrant? How ’bout kids have a history of being truant?
- Who should be tracked? Is it really the individual with disabilities on whom we need to collect data? Or is it on the staff, provider, situation, etc? (Read articles below… is it different if the school puts the tracking device on the bus or if they put it on each child’s backpack?)
A lot of things to consider. The jury is out on this. This is timely. It’s an issue being wrestled with by courts across the nation. Think about it. It’s important, relevant, and an example where technology is really testing our beliefs in the basic principles of being American.