News for the Second Quarter of 2004
IN THIS ISSUE...
* The Arc of Utah Advances to The Hill
* The Arc of Utah Board of Directors
* Our Hats Off
* Education
* The Arc of Utah Membership Application
* The Arc of Utah Needs Your Help-More Than Ever
* Advocacy in Action
* Calendar
* Board Member Spotlight
* The Utah Department of Health CHIP Open Enrollment
* Accessibility Utah
* In Recognition
* Take Note
* How You Can Help
The Arc of Utah Advances to The Hill
Online at the Hill
Policy makers and advocates gather in the Governor's Office at the State Capitol to celebrate passage of a bill that encourages computer access across the state. From left to right: Kathy Farnsworth, Rep. Calvin Bird, Tom Brownlee, Jeremy Zoby, Governor Olene Walker, Myron Jones, and Sen. Gene Davis. For the full story, see page 4.
By Joyce Dolcourt, Director of Government Affairs, The Arc of Utah
The Arc of Utah had a very active presence on the Hill during the 2004 Utah Legislative session, working in collaboration with advocates from the disability community, low-income groups and educators, The Arc of Utah continued to educate Legislators about the programs that provide services and supports for people with disabilities. This was no easy task as the atmosphere at the Capitol was dominated by reaction to the highly publicized Parker Jensen case and parental rights. Advocates for The Arc focused attention on the restoration of Medicaid services and additional funding to get people off the waiting list and into Division of Services for People with Disabilities (DSPD) services.
Dental and Optometry Services
Effusive energy was expended trying to get adequate funding to fully restore adult dental and optometry services and the efforts were partly successful. The Legislature allocated $1 million for Medicaid emergency dental services for use by individuals who are aged, blind or disabled. The Utah Department of Health (DOH) wants to increase the number of dental services provided under emergency care so people with dental emergencies will have more options than the current infection control and extraction. Details for using the money are being developed.
Community-Based Services
The Arc of Utah spearheaded the public testimony for increased community based funding at the Health and Human Services Appropriations Subcommittee. Notified by an email legislative alert system, families from around the state contacted their legislators to put a face on the 1929 people on the waiting list. The Legislature responded with $300,000 ongoing new money for the waiting list, a two percent cost of living adjustment for community providers and $300 funding for portability between ICFs/MR and Home and Community Based Services. DSPD has also been able to identify an additional $300,000 in internal savings that can be applied to the wait list. With federal matching funds there should be nearly $2 million available to help move people into community services.
The Arc of Utah
Board of Directors
The Arc of Washington County
President
Jim Sevy
Staff
Executive Director --
Director of Government Affairs
Joyce Dolcourt
Receptionist
Donor Services Manager
Melba Gibson
Our Hats Off
While the staff of The Arc of Utah has worked hard to build relationships with Utah's policy makers, we could not do it alone. We may have set the stage by providing facts and figures; we are indebted to you, our grassroots, for taking the time to respond to the numerous legislative alerts sent to you during the session. There is nothing more powerful than a self-advocate, parent or relative telling the "real story." Thank you for helping us make Utah a better place to live for people with cognitive, intellectual and developmental disabilities.
Sincerely,
Donna Gleaves, Executive Director
Joyce Dolcourt, Director, Government Affairs
Education
The Arc of Utah Questions Special Needs
Scholarship Legislation
Legislative advocacy is never without controversy, but this year members of the disability community found themselves divided over HB 115 Carson Smith Special Needs Scholarship. The Arc of Utah opposed this legislation for the following reasons:
* The Individuals with Disabilities Education Act already allows students to attend private schools if the IEP team determines that is the best educational environment for them
* A student in private school loses his or her rights to due process under IDEA unless that student is placed in the private school through the IEP process
* Students in private schools do not have to meet the same accountability requirements as those in public schools
* Under HB 115, teachers do not have to be trained or certified in special education
* There are few, if any, private schools in rural areas
* There is considerable evidence to suggest that the clear majority of students with and without disabilities benefit from inclusive settings
* The bill is very broad - making scholarships available to all 56,000 students in special education in our public schools, plus the unknown number of students with disabilities in private schools specializing in serving children with disability or not
* While this bill may give assistance to a limited number of students, those same students may well face no funding and a growing waiting list when they reach the transitional age of 22.
The Arc of Utah carefully considered the ramifications of HB 115 and concluded that while the sponsors had good intentions, the legislation was flawed and could seriously undermine special education for all children in Utah with special needs.
Governor Walker has vetoed this bill and is proposing an alternative process to assist families who have children with severe needs. This veto has sparked debate among the numerous gubernatorial candidates running for the fall election. The debate, however, is centered on parental choice and tuition tax credits. Somehow the special needs of children have been lost in all the rhetoric. The Arc of Utah continues to steer the conversation to what is in the best interest of all children with disabilities.
The Arc of Utah Membership Application
See the application online
The Arc of Utah Needs Your Help-More Than Ever
The Arc of Utah needs your commitment to continue programs that assist our advocacy for people with disabilities and their families through financial support, gifts-in-kind, or volunteering time. Every cent you donate goes directly to benefit the more than 44,000 people in Utah diagnosed with cognitive and intellectual disabilities. Your dollar buys:
* Full-Time Advocacy: Professional staff act on the behalf of people with disabilities on the state and national levels
* Education, Information and Referral Activities
* Representation on numerous state and nonprofit committees that promote policy and services for people with disabilities
* Labor of Love provides gifts to people with disabilities without family for the holidays
This project provides Christmas presents to people with disabilities who typically do not have family and who otherwise would not experience the joy of Christmas. We also assist families who are in financial need.
The Arc of Utah goes the distance to raise funds for advocacy and programs from the items you donate through household recycling.
To schedule a FREE Household Donation Pick-Up of usable clothing or household items, contact donor services at 801-977-9311 or 800-870-9311. Operators are standing by.
Thank you
For more information about how your donation helps to make the world a better place for people with disabilities, go online to www.arcutah.org. Donor services is online at http://www.thrifttown.com/html/the_arc_of_utah.html
Non-Profit Organization
U.S. Postage Paid
Salt Lake City, UT
Permit #520
The Arc of Utah acknowledges the American Academy of Professional Coders for their generous support.
The Arc of Utah
155 South 300 West
Suite 201
Salt Lake City, Utah 84101
Phone: 801-364-5060
Fax: 801-364-6030
Web site: www.arcutah.org
Advocating for and with people who have cognitive, intellectual, & developmental disabilities & their families through awareness, outreach, support, education and public policy.
Advocacy in Action
The Arc of Utah Adds to Success of Computer Donation
Legislation
The Arc of Utah is particularly proud of our role in the successful passage of HB 188 Donation of Surplus Computers to Persons with a Disability. We originated the idea and together with the Legislative Coalition for People with Disabilities (LCPD) brought the idea to Representative Calvin Bird, who was enthusiastic about sponsoring this legislation. Senator Gene Davis carried the bill in the Senate. As of May 3, 2004, all non-profit organizations that serve people with disabilities will have the opportunity to obtain surplus computers from the State of Utah for distribution to people with disabilities. The Division of Services to People with Disabilities is developing the policy and procedures.
CHILDREN'S HEALTH ISSUES
The following presentations will be held from 6 p.m. to 8 p.m. (on the days noted) at Primary Children's Medical Center, 100 North Medical Drive, in the third floor auditorium. The presentations are open to parents and their children, 12 years and older. No advance registration is required. For more information, call Pediatric Education Services at 588-4071.
June 17
Transition to adulthood for special needs children. Kris Ferguson, MSW, will discuss finding community resources and employment opportunities.
September 21
Families raising children with chronic illness. Pat Collins, MSW, and Kirk Simons, MD, will discuss the impact of childhood illness on the family and the emotional challenges of living with chronic illness. In addition, they will present strategies for coping with the many issues facing families of children with chronic illness.
THE ARC OF UTAH
Have you ever considered becoming a board member for the state affiliate? The Arc of Utah is looking for board members willing to assist in the advocacy of rights for people with disabilities. The state affiliate of the national organization meets at 6:30 p.m. on the fourth Tuesday of each month at The Arc of Utah offices at 155 South 300 West, Suite 201. For more information, call 801-364-5060.
UTAH PARENT CENTER
The statewide nonprofit organization provides training, information and referral to parents of children with physical, cognitive, mental and emotional disabilities. Ongoing workshops include "Parents and Partners in the IEP Process" and the "From No Where to Know Where through Educated Transition Choices." For more information, contact The Utah Parent Center at 272-1051.
CALENDAR
Advocates Take 400-mile Trip North in Drive for Surplus State Computers
Elsie Dee and her son Myron Jones traveled 400 miles to show their support and appreciation for HB 188, and planned to do the reverse trip back to Montezuma Creek the same day after shaking hands with Governor Olene Walker and the bill's sponsors.
"This is something families need and don't have where we live," said Elsie.
A computer is a much envied commodity in Elsie's and Myron's corner of the state, and not in the budget of many families living in and around the Southern Utah reservation. The bill, however, makes computer ownership a potential reality based on the numbers of computers and patrons the program attracts.
Myron, who doesn't talk a lot, prefers a computer as his voice in communicating with others. An Internet connection would be a "in my wildest dream" category for Elsie, who now travels to Colorado or New Mexico for computer access to her Emails.
Just about everything related to services for Myron is a many mile drive for the family. The school district covers so much space that Myron has to catch the bus each morning at 7 for a 45-minute drive to the senior high. Occupational, physical, and speech therapies are services available upon the 400-mile trip north.
"A lot of things you have in Salt Lake are not available in southern Utah," said Elsie. And, thanks to advocates like Elsie, computers may help bridge the distance.
Doug Bull isn't a face you're likely to miss at any event that promotes advocacy among his peers. Why, you may ask?
Because the Vice President of The Arc of Utah rarely misses a chance to attend everything from People First golf outings to the recent School to Work transition fair sponsored by the Murray School District plus everything in between. And, aside from the dedication Doug has for advocacy, he really likes the social whirl and the opportunity to share his success stories.
Board Member Spotlight
Board VP Doug Bull Rides New Frontiers
Doug is the former president of the Salt Lake People First group and he is serving his first term as Vice President of The Arc of Utah. He bowls a mean game, holds a job he likes, and can navigate the mysteries of Salt Lake Valley's public transit system. His cell phone is like an appendage.
Life, however, hasn't always followed the all inclusive route.
Doug didn't have the easiest time in a California public high school two decades ago when those who should have been classmates tended to avoid the students cloistered in the rooms at the end of the hall. "That was hard," he says, and an admittedly bleak experience that because of who he was put him in harm's way of the bullies that preyed upon him and his friends. One incident he painfully recalls was a one-sided fight of which he was the victim.
Fortunately, resiliency is one of Doug's trademark.
Doug prefers to leave the tough stories of the past in the past. The road since public school has thrown its curves, yet he has managed to land a fulfilling job, get himself elected to leadership positions in several advocacy groups, nurture friendships, gain personal recognition, and earn the opportunity to attend the 2004 Advocacy Conference in Anaheim, California (with time scheduled for fun at Disneyland to boot). "It can't get much better," he laughs.
That's left to be said since there's a host of opportunities that won't get past Doug. Already he's looking forward to added responsibility in the People First movement, the chance to rack up more raises at his workplace, and bowling the perfect turkey (three consecutive strikes).
In the meantime, he's the face in the crowd you can't miss. He's the guy who found his way around the spills and an advocate who relishes the spotlight.
The Utah Department of Health CHIP Open Enrollment
To apply for CHIP during Open Enrollment:
1. Print and mail an application - Applications must be postmarked during Open Enrollment, May 3 - 12
2. Apply online anytime at http://www.health.utah.gov/chip beginning 8 a.m. May 3 and ending midnight May 12
3. Visit an eligibility office - to find the office nearest you, call 1-877-KIDS-NOW (1-877-543-7669)
Accessibility Utah
Accessibility in Worship
The Accessible Congregations Campaign seeks to enroll congregations of all faiths that commit to removing their barriers and welcoming people with all types of disabilities. Committed Congregations submit a signed form to the National Organization on Disability (NOD) and receive a certificate. They may not yet be totally free of barriers in architecture, communications or attitudes for committing to identify and remove barriers to full participation. As of March 9, 2004, 2,181 congregations have joined the Accessible Congregations Campaign, but only the following three congregations from Utah have earned a certificate thus far:
* St. Bridget's Catholic Church -- Milford
* Mount Olympus Presbyterian Church -- Salt Lake City
* Mt. Tabor Lutheran Church -- Salt Lake City
For more information, NOD is at http://www.nod.org/
Accessibility in Schools
Title II of the Americans with Disabilities Act (ADA) requires public schools to provide program access and an integrated setting unless separate programs are necessary to ensure equal benefits of services. Structural modifications, such as elevators and ramps, can achieve program accessibility; however, physical access requirements also can be met by adjusting the environment, for example, relocating a class or activity. Utah law defines disability as: a physical or mental impairment that substantially limits one or more of the major life activities of such an individual; a record of such an impairment; or being regarded as having such an impairment.
Concerns about access in Utah public school access can be filed with the Utah State Office of Education (USOE). For information about the USOE ADA, contact Carol Lear at 801-538-7835 (phone) or by FAX at 801-538-7768.
In Recognition
CHANGE OF ADDRESS
The Legislative Coalition for People with Disabilities has moved. The new address is:
1561 N. Grandview Land, Provo, UT 884604
The office phone number is:
801-373-1197, ext.44
The FAX number is:
801-373-1198
Email: lcpd@utahrise.com
Web site: http://www.lcpdutah.org
For more information, contact:
Kris Fawson at 801-243-1066
Camille Powell, 801-580-6091
The Arc 2004 National Convention
November 18-20, Boston, Massachusetts
Join The Arc's affiliated state and local chapters for three days of dynamic plenary sessions, informative workshops, unique networking opportunities and guest speakers at the annual National Conference to be held in beautiful historic Boston.
Watch The Arc of the United States web site at http://www.thearc.org for details. Or, better yet, bookmark the site and keep up with all the latest information about issues affecting people with developmental disabilities.
Take Note
Did You Know?
In 2000, more than 203,700 Utah residents received services through Medicaid, including 25,260 people with disabilities, Learn more about the state of Medicaid in Utah at http://www.thearc.org/medicaid/, courtesy of the public policy collaboration projects conducted jointly by The Arc of the United States and United Cerebral Palsy.
Ann Clyde
Bob & Martha Craghead
Claudia Moore
Cynthia Proctor
Dean Wright
Evelyn Fugate
Irene Fryer
James Smith
John Ord
Joyce & Jack Dolcourt
Joyce Barnes
Larry Ashton
Linda Smith
Lisa Taylor
Luz Robles
M. Yardley
Mandee Buckley
Mark Crockett
Mary Woodward
Mr. & Mrs. Clifton Pyne
Myrna Thacker
Nathan Jacobs
National Ability Center
Pamela Hansen & Family
Patricia Cook
Phyllis Crowley & Family
Robert Beecher
Sandra Gray
Scott Bonn Family
Thomas Moore
Bob & Martha Craghead
Chris Connole
Dalanie Edginton
Janette Burton
Jean Lown
Morgan Stanley Bank
P. Crowley
Questar Volunteer Team
Sonja Wagner
HOW YOU CAN HELP
For information about how you can help The Arc of Utah, please contact the state office at 801-364-5060.
