...... BETWEEN ...... THE LINES COLORADO DEVELOPMENTAL DISABILITIES COUNCIL WINTER 2009

Of course, I don’t know how life will unfold any more than you What about when we do. I set future’s stage with props and lighting and lean on trust, guessing that the biggest issues will be things I haven’t even are gone? by Rebecca Lee thought of. The thread connecting my heart to Ali’s is crafted of blue steel, indestructible, unbendable, tough as nails. I have Parents of children with special imagined snipping that thread and dropping my end into a needs hear a lot of questions: canyon, so heavy it’s become, only to hear the imaginary echo How old is she? and shudder to recognize my own level of exhaustion. Other What happened? days my eyes well with tears at even the thought of her living Does she go to school, have somewhere other than in our home. When she is away at camp, friends, work? I’m struck not by how the days grow fat with freedom; that would Will she always live with you? be expected. I’m struck by how much I miss her. Not the lifting How do you do it? or the loud music or the ongoing requests for assistance, but We ask ourselves many others: HER, with her distinct brand of positive energy, remarkable Why her, why me? insight, and frequent outbursts of unadulterated joy. I take Is there freedom in being different? myself out of the picture and squint to see the future, waiting Will the world be gentle, kind, forgiving? for the blurred edges to come into focus. I think I recognize an Who will take care of her when I no longer can? image but it doesn’t last. I can only know now. What will happen? From time to time I’m asked to talk with groups of parents Ali was 13 when I went to my first workshop about planning for whose kids have special needs. Usually the kids are younger the adult lives of our kids with special needs. The leader, himself than Ali. Having traveled more miles on a journey few of us a father of an adult child with Down Syndrome, asked us to have chosen, I offer the perspective of time. The invitation name the three things we feared most when we thought about comes with an expectation: Show us what’s ahead; we our kids being here without us. I wrote isolation and loneliness, and started crying. I remember little more about the day except want to prepare. My friend Caroline believes that what they that I was not alone in my sadness: nearly every parent in the really want is to see if I’m still standing. room expressed those same fears. Most, like me, were in tears.

We parents leave workshops like that one and watch lines come So what do I tell them? to our faces, see puberty blossom in our kids, see the signs of That even though we’ve never met, I know them. I know what their growing up and our aging appear simultaneously, the defines them above all else. I live with their fears and I understand harbingers of life to come. We establish Special Needs Trusts their love. I show them that I have a life and so does my child, and fund them with life insurance policies on ourselves. We talk and that our lives are moving out of intertwined and tangled into with family members about serving as trustees, wondering if side by side. They see that I haven’t forgotten how to laugh or they have any idea what a “yes” would entail if we were hit by a cry, haven’t gone numb or been consumed by the sheer car on the way home. We create a master list of all the agencies managing of all that’s asked of us. I’m convinced it’s not so and individuals who provide services for our children, with much what I say but that I am there to say it. I show them that names and phone numbers, and put the list in a labeled file. We I am still standing. give copies to our brothers and sisters-in-law. We look at our Near the end of our time together, we hear Ali squealing out in other children, at our nieces and nephews, and wonder who the hall. We hear her smile before we see it. She zips into the among their generation will step up to help manage our child’s room, asks me how much longer, turns on a dime and takes off life in 20, 30, 40 years. We practice yoga. We look for angels. again. On her own, happy, communicative, engaging. At the Like a mantra, we affirm that we stay healthy and strong. Much moment, I ask for nothing more. has been asked of us; more is yet to come. — Rebecca blogs at rebeccalou.com CDDC

I y n c c a lu c s o i v o d n 1970’s Normalization and A

Systems Change 2020 Technology: Social Colorado Developmental Disabilities Council 3401 Quebec St., #6009 by Marcia Tewell Denver, Colorado 80207 Inclusion or Stigma? (720) 941-0176 [email protected] www.coddc.org A recent symposium at the Coleman Council Members: Institute highlighted innovative new technology that will greatly enhance Individuals: interdependence for people with Irene Aguilar—Denver disabilities in the future. Informal Maria Cabral—Denver discussions with participants raised the Stephanie Garcia—Pueblo Penny Gonnella, Chairperson—Denver issue that some new technology could, Kathy Grant—Denver if used without appropriate intent, put Betty Henderson—Westminster people at risk of increased stigma or Christine Herron—Centennial isolation. It is the use and the Sharisa Kochmeister—Lakewood Mike McCarty—Boulder implementation that will determine the Mike Nelson—Greeley interpretation of the technology and thus, Benjamin Sutton—Denver the end user. The questions raised at the Karie Valdez—Alamosa symposium deserve mindful discussion Karl Valdez—Pueblo of unintended consequences as some Agency & Organization Representatives: types of technology become more Todd Coffey affordable and, in some cases, Department of Human Services, Older Americans Act reimbursable by Medicaid/tax dollars. Linda Dunn Department of Human Services, A young man, Rusty, is the lead in a video called “Living the Smart Life” produced by Rehabilitation Act AbleLink Technologies of Colorado Springs. In the video, Rusty illustrates their vision Eileen Forlenza of how person-centered technologies can be used to support independent living and Department of Public Health & Environment, Maternal & Child Health community access. In the story Rusty lives with his dog in his own home, has close Christi Hendrickson relationships with neighbors and family, and works in a meaningful job. A major factor Breaking the Barriers, Non-profit Organization in his lifestyle is the use of cognitive support technologies which allow video contact Thom Miller with others, verbal reminders if a stove is left on, as well as reminders about his daily The Legal Center, Protection & schedule, grocery list, and calendar. There is no paid direct care staff in Rusty’s life. Advocacy Organization A critical factor in his inclusion in the neighborhood is the universal access of the Shari Repinski Department of Human Services, technology. Anyone with an ADP or similar alarm system is familiar with the same Title XIX Social Security Act core technology. Thus, anyone using a security system who needs reminders Corry Robinson because of aging or living alone can benefit from the same types of technology. JFK Partners, University Center for Excellence There is no stigmatization in this ‘SmartHouse.” The Honorable Debbie Stafford Colorado House of Representatives The video will soon be available for viewing on AbleLink’s website at Colorado General Assembly www.ablelinktech.com. Personal copies of the DVD are also available from Ed Steinberg AbleLink for $30 at (719) 592-0347. Department of Education, Individuals with Disabilities Education Act Although not presented at the conference, another example of valued technology that could create a normalized situation for someone traditionally excluded is that of the Council Staff: Bluetooth that is attached to the ear allowing a person to talk on a cell phone, hands free. It used to be that a person who appeared to be talking to themselves was thought Marcia Tewell Executive Director Marna Ares Planner/Newsletter Editor Mackenzie Helton (Disclaimer) Fiscal Manager The views expressed by authors in Between the Lines, the quarterly newsletter of the Colorado Developmental Disabilities Council, are not Patricia D. Murphy necessarily those of the Council, its individual members or the staff. Letters to the Editor are encouraged, as are requests for correction of Administrative Assistant factual information. Please direct such to the newsletter editor at [email protected].

2 to have a mental health issue, and Living in a place of one’s Many other accommodations have was ostracized and stared at. similar social uses and do not create However, now that Bluetooth choosing, in a a stigma for the individual. technology is common, talking to neighborhood and with a One potential use of technology was oneself while walking down a busy roommate of one’s mentioned in conversation at the street is a highly valued status conference. An RFID chip could be symbol, as access to that particular choosing does have a used to record the amount time a technology involves expending some valued analog. Living with direct support professional spent dollars. This example is similar to the eight other people with interacting with a person receiving time in history in which a queen was support. The chip would record the born with a clubbed foot, and the disabilities in a group home, amount of time of the interaction and citizens in the country took on her even if it has great report that directly to Medicaid for gait as well as her foot attire with the billing purposes. This technology hope of sharing her great status. technology and furniture from Pottery Barn, still has could make paperwork and record The principle of Normalization was keeping reliant totally on technology developed and popularized in the no valued analog. and potentially more efficient. While 1970’s, yet is still rarely realized thirty attorneys and doctors bill for their time years later. The essence of the principle This group living example does not in fifteen-minute increments, there is is that people who have traditionally include the idea of natural proportions. no analog for people interacting with been excluded from society should Rusty, from the above-mentioned others in the community or in their participate in meaningful roles, such video, is living a culturally valued life own homes. It is at this point that as employee, roommate, neighbor or in his own home, just as would his CMS, private agencies promoting family member. This participation neighbors, sister or family. such efficiencies, and the buyer of takes place in the same place other such technologies need to consider people live, work and play, and at the Relative to technology and its the stigma created by such use. One same times. uses, there are endless positive would hope that consideration of the possibilities, but only if the use has person being served would outweigh Also important is the idea of natural universal access. One positive the cost savings and efficiency such a proportions within a place or setting. example of technology used to create mechanism could create. Ten percent of the people in the U.S. social opportunities is that of an older have a disability; so all settings should woman who, by picking up her cane, I would encourage you to attend the also reflect that proportion. A person alerts her next-door neighbor that she annual Coleman Institute conference. with a disability should be able to is going for a walk and would like her It is a great way to open your mind to choose who to live with, where to live, neighbor to join her. Are other people new ideas and see the future in ways and what type of work to do. In short, going for walks with their neighbors? that many would not imagine today. to determine if something is congruent Yes. Is the woman living in a There will be a day when the issues with the normalization principle, you neighborhood of her choice with of recruitment and retention of direct may ask, “What is everyone else people she chooses? Yes. This is a care staff will not loom as large as doing?” In a more scholarly way, the great universal use of technology. they do today. Staff is already being same can be expressed by the supplanted with the use of technology question, “What is the culturally valued in many ways, with great success. analog?” For example, what is the The Smart House technology is culturally valued analog of a sheltered wonderful if the person being served workshop? There is none, as there chooses to live in such a place, and are no other people in a valued status the rate of staff turnover can be less. who participate in such activities. What However, none of the new technology is the analog of living in your own should be used with efficiency and apartment within a wing comprised cost effectiveness as the primary only of others with disabilities? This considerations. comes a bit closer, but the situation still does not have a culturally valued  analog and is not in alignment with normalization principles.

3 Sister Act Section CDDC

I y n c c a lu c s o i v o d n A

Systems Change     Developmental  changes over time, which focused on the efforts of families, professionals, and state Disabilities agencies to improve supports for all people with developmental disabilities;

Assistance and  current emphasis on fundamental systems Bill of Rights Act change, including legal services, advocacy, and capacity building at the state and (DD Act) local levels. We focus this project on helping people with developmental In the important work that you do every day with people with disabilities and their families obtain the information, assistive disabilities—for which we again thank you—I’m sure you’ll agree that there is no substitute for going back to source technology, and supports they need to best choose where to information for inspiration, guidance and confirmation. live, work, and be active in their communities. For their gracious help in assembling this collection we I’m pleased to announce that the entire Developmental deeply appreciate the contributions of the Connecticut and Disabilities Assistance and Bill of Rights Act (DD Act)— Texas Developmental Disabilities Councils. Their respective a comprehensive collection of legislation, hearings, archives of historical documents have helped to make this manuals, reports and reviews—is now available at history of the Developmental Disabilities Assistance and Bill www.mncdd.org/dd_act/dd-act.html. of Rights Act as complete as possible. The Developmental Disabilities Act has made a crucial We urge all interested parties to take advantage of this difference in the lives and futures of individuals with free resource. We would greatly appreciate your mentioning developmental disabilities and their families. Through this this opportunity in your next newsletter, listserv, blog, legislation, federal funds support the development and discussion board, online group or other communications operation of Councils on Developmental Disabilities, with those you work with, and forwarding this message to Protection and Advocacy Systems, University Centers of anyone who might be interested. Excellence (formerly known as University Affiliated Programs), and Projects of National Significance. Thanks again for all you do, and your consideration of In this free online repository, you will see how the DD this ongoing project. Act has provided structure in support of all people with disabilities, and has evolved to assist people with developmental disabilities to pursue meaningful and Colleen Wieck Executive Director productive lives: Minnesota Governor’s Council on Developmental Disabilities  the early legislation, emphasizing advancement of scientific understanding, professional education, and ensuring access to, and safety of, institutional facilities;

4 I Am a Survivor– Many Are Left Behind

As a result of the passage of the United I spent my childhood and adolescence in Nations Convention on the Rights of a state institution for severely disabled Persons with Disabilities, December 3 children. I was starved and neglected. A United Nations Opening Day for the Convention on the Rights of Persons every year is International Day of People hundred and sixty of my friends died there. with Disabilities with Disability. The Convention entered I am a survivor. into force on 3 May 2008, after the an exception. Through no desire of my That isn’t a heroic achievement. Anyone Convention received its 20th ratification, own, I was out front in the struggle to get who was put into a large institution in the U.S. not among them. The 2008 rights for people without speech. the times when large institutions were theme of the International Day of sugarcoated concentration camps was as I tried to show the world that when Persons with Disabilities is “Convention much a hero as I was. They stayed alive people without speech were given the on the Rights of Persons with Disabilities: when they could and they died when they opportunity to participate in education we Dignity and Justice for all of us.” couldn’t. Such heroism is easy to achieve could succeed. I went to The Day brings together people with in giant barracks where the prisoners stay and got myself a degree. That, too, was disability and the general community alive through being cheery enough to seen as an exception. and aims to: attract a staff member to give them that I gave papers and wrote articles on the vital extra spoonful of food.  showcase the skills, abilities, right to communicate. I set up a website contributions and achievements to show that there was hope for people of people with disability I wasn’t exceptional without speech. People thanked me for being an inspiration; however, they didn’t  promote a positive image of in anything other than understand why there weren’t more like people with disability me. They continued to act as if speech  involve people with disability my good luck. was the same thing as intelligence, and to and the broader community in pretend that you can tell a person’s capacity by whether or not they can speak. activities to celebrate and raise I was selected for awareness of the Day. Please listen to me now.

In , Anne McDonald, the recipient an experiment. The worst thing about being an inspiration of the Personal Achievement Award joined is that you have to be perfect. I am a the four other recipients of the 2008 Rosemary Crossley wanted a subject normal person with only normal courage. National Disability Awards at the awards for her Bachelor of Education literacy Some people who should know better ceremony at Parliament House in project. She chose me. The aim of the have tried to give me a halo. Anybody Canberra on 3 December 2008. experiment was to see if I could make could have done what I have done if they The Personal Achievement Award is given gains in my tight-armed pointing to blocks too had been taken out of hell as I was. to a person, either with disability or caring with different colours on them. Rosemary If you let other people without speech be for someone with disability, who has over- found I could point to colours, then to helped as I was helped they will say more come adversity to achieve personal goal. words, and then to letters. She taught me than I can say. to spell and to make my wishes known. Anne McDonald asked her attendant to They will tell you that the humanity we read the following statement of thanks: I made known my wish to leave the share is not dependent on speech. institution, and then all hell broke loose. Ladies and gentlemen, They will tell you that the power of literacy I went to the Supreme Court and won the I’d like to thank the judging panel for lies within us all. right to manage my own affairs. choosing me, and I’d also like to thank the They will tell you that I am not an exception, many people who’ve helped me along the Unfortunately, that didn’t mean that the only a bad example. way and made it possible for me to be institution offered the other residents the here in Parliament House tonight. right to manage their own affairs. I was

5 Many are left behind. We still spell sentences. When she turned eighteen Anne went to court neglect people without speech. to win her freedom from St Nicholas. We still leave them without a After leaving the institution Anne wrote a bestselling book with means of communication. It Rosemary Crossley called Annie’s Coming Out, later made into should be impossible to miss an award winning Australian movie. Anne went to university out on literacy training, but and eventually graduated with a Humanities degree. Anne was thousands of Australians one of the first people with severe cerebral palsy and no still do. speech to obtain a university degree in Australia. As Stephen Jay Gould wrote, General Assembly Chamber UN Headquarters, New York Anne has dedicated her life to advocating for the rights of “We pass through this world but once. Few tragedies can be people who can not talk. She is a pioneer in the field of more extensive than the stunting of a life, few injustices deeper disability rights and has courageously taken on landmark legal than the denial of an opportunity to strive or even to hope, by a battles that have changed the face of disability legislation both limit imposed from without, but falsely identified as lying within.” in and across Australia.

Anne McDonald was born with severe cerebral palsy. At the Anne has published articles and given presentations at age of three she was admitted to the St Nicholas Hospital, a conferences around the world on topics such as the Right to state institution for children diagnosed as severely retarded. Communicate, Disability and Ageing and most recently Judging She was unable to walk, talk or feed herself. Over the next by Appearances. Her popular website now provides online thirteen years Anne received no therapy, no education and resources on the trials of people with communication disability. very little food. http://www.idpwd.com.au/awards.asp Eventually, with the aid of Rosemary Crossley, Anne learned http://www.un.org/disabilities/ to communicate by pointing to letters on an alphabet board to http://www.deal.org.au/AnnePages/AnneHome.1.html 

Strengthening Employment Outcomes for Rural Women With Disabilities by Martha Carstensen

Women with disabilities who live in rural communities face reimbursement or effective coordination. This does not result in complicated challenges in obtaining productive employment the reliable transportation needed to maintain employment, that pays a livable wage. A high unemployment rate for women intensifying the disadvantages for women with disabilities in with disabilities in rural communities is associated with a finding competitive employment in their rural communities. variety of factors that remain constant in each rural geographic An additional barrier to employment can be found in the under- region. This article will examine some of the difficulties and availability of support services. In reviewing support services in opportunities particular to seeking small town/rural paid rural states, funding concentrates services to the larger employment, factors in achieving positive employment population centers, leaving outreach at a minimum in rural outcomes, and options for support networks to enhance areas, with understaffed satellite offices trying to serve high- work opportunities and successful outcomes for women need rural communities. With current funding limitations, these with disabilities. satellite offices have staff who service large geographic areas Barriers to Employment and high caseloads. This reality requires women with disabilities According to the Association of Programs for Rural Independent to have advocacy skills and reliable transportation to access Living (APRIL), “decades after the advent of the independent these support services in rural communities. Absence of these living and disability rights movements, transportation remains creates accessibility barriers and community isolation. the number one issue for people with disabilities living in rural Women with disabilities who do access assistance despite the areas.” Transportation funding in rural states is often limited to barriers do so with the tenacity that is an icon of rural living by the population centers of those states. Women with disabilities connecting with the strong social network of small town living. outside those population centers often rely on family members Interdependence is the foundation of this social network in rural to assist them with transportation, without appropriate financial communities. Women with disabilities who are part of this

6 interconnectedness of community get their to capitalize on this connection is essential to needs met, while those who are not building self-determination and employment interconnected live in isolation. opportunities for women with disabilities. Building Partnerships One example of how social networking can assist women in gaining meaningful Schools, community service employment is the ability to obtain providers, employers, and families customized employment through job can enhance work opportunities and carving or shaping that creates a successful outcomes for women with flexible schedule to meet the needs disabilities by identifying the barriers of the employer/ employee relationship. and then focusing on solutions in This concept is more acceptable to an partnership. This partnership connects employer when they and the employee all support systems within the social have an established relationship. Since network of rural America, braiding and social networking is an essential component blending personnel and services by using of job acquisition, rural communities provide an public and private dollars to enhance access to advantage by nature for women with disabilities through employment opportunities for rural women with disabilities. offering natural opportunities to interact with the same Community services such as Independent Living Centers people on a recurring basis and build relationships. are an ideal choice to take a lead role in the development Conclusion of this partnership since they are often the hub for people Building organizational partnerships, and assisting women with disabilities in rural communities. Schools are another; with disabilities to build and participate in interdependent mandated through the Individuals with Disabilities Education networks, are key to supporting rural women with Act (IDEA) to provide transition services to youth with disabilities to find long-term employment and shift from disabilities, their services can be strengthened by poverty to self-reliance. Living and working in a rural partnerships with CILs, businesses, and self-advocacy setting with strengthened community support now is a and other organizations as part of their transition services. viable option that can afford economic well-being for Together these partners can create multiple points of women with disabilities. entry into the employment support system, and help women develop the skills (including self-advocacy, self- References determination, and social networking skills) to access them. Association of Programs for Rural Independent Living (APRIL) (2008). For instance, entrepreneurial opportunities abound in rural Rural transportation. Retrieved September 22, 2008, from www.april-rural.org/transportation.html communities and by establishing a mentor network to help women learn a marketable trade, agencies, businesses, Grande, S. (2005). Creating rural transportation in Maryland: Delmarva Community Services. Impact: Feature Issue on Meeting schools and community organizations working together can Transportation Needs of Youth and Adults with Developmental help women with disabilities make a livable wage by Disabilities, 18(3). [Minneapolis: Institute on Community Integration, building their own ventures with guidance and persistence. University of Minnesota].Retrieved 9/24/08 from http://ici.umn.edu/products/impact/183/ Partnerships can also address the rural transportation barriers through innovative approaches such as mobility McLary, J. (2005). Mobility management: Maximizing resources through collaboration. Impact: Feature Issue on Meeting Transportation management (also called coordinated mobility). This is a Needs of Youth and Adults with Developmental Disabilities, 18(3). model for expanding transportation options that combines [Minneapolis: Institute on Community Integration, University of Minnesota]. the resources of human service, employment, non-profit, Retrieved 9/24/08 from http://ici.umn.edu/products/impact/183/ business, transit, and other entities in a locale to Martha Carstensen is Director of the Equity Outreach Project, collaboratively coordinate and deliver transportation Montana Center on Disabilities, Montana State University, Billings. services (McLary, 2005; Grande, 2005). And partnerships She may be reached at 888/866-2312 or [email protected]. For more information visit www.msubillings.edu/equityoutreach. between schools and service providers can provide training that grows the use of technology such as the Internet by Reprinted with permission from Impact: Feature Issue on women with disabilities, changing the course of how rural Employment and Women With Disabilities (Summer/Fall 2008) published by the Institute on Community Integration at the women access work and compete in the global market. University of Minnesota. The entire issue is available online at: Personal Networking http://ici.umn.edu/products/impact/211/default.html. In rural America networking is a daily activity. Social networks become employment networks, and learning how 

7 “The Internet is seen by many women with disabilities as an important accessibility aid to access mainstream information and services, as well as information to meet their specific needs as women with disabilities.”

... Women with Disabilities Australia (WWDA). (1998). http://www.wwda.org.au/wkshp.htm. Effect of a computer-based intervention on social support for chronically ill rural women: Virtual support groups can increase perceived social support. (Rehabilitation Nursing, 2004, 29(5), 169-173.) “Over the course of the past number of years women with disabilities have been struggling to bridge their own personal barriers and increase their capacities by using technology, recognizing that women with disabilities face increased barriers of isolation and exclusion in today’s increasingly technologically connected society.” http://www.womenspace.ca/policy/facts_disabilities.html. State accused by the U.S. Department of Justice of violating the constitutional rights of people with developmental disabilities: TEXAS (December 2008)

Statistics are human beings with the tears wiped off. — Paul Brodeur, Outrageous Misconduct, Pantheon Books, 1985. State with the highest number of institutions for people with developmental disabilities: Texas (13 institutions, 4,500 inmates) (http://www.disabilityscoop.com/2008/12/04/texas-2/984/) Weavings Number of institutions in Colorado: 3 (for 2006-2007) Number of inmates: 467 (for 2006-2007) http://www.cdhs.state.co.us/ddd/ “The institutionalized population includes people under formally authorized supervised care or custody in institutions at the time of enumeration. Such people are classified as “patients or inmates” of an institution regardless of the availability of nursing or medical care, the length of stay, or the number of people in the institution.”

Web Web http://www.ilr.cornell.edu/edi/disabilitystatistics/sources.cfm

CDDC Colorado Developmental Presorted I y n c c Disabilities Council a lu First Class Mail c s o i v o 3401 Quebec St., #6009 d n U.S. Postage Paid A Denver, Colorado 80207 Denver, CO Permit No. 738 Systems Change M501000020