On Target is a monthly publication
of the Indiana Governor's Council for People with Disabilities.
We welcome your suggestions for newsletter content and
ideas concerning the actions of the Council. On Target is made available
in accessible formats upon request.
Suellen Jackson-Boner
Executive Director
Christine Dahlberg
Associate Director
Paul Shankland
Grants Manager |
Congress addresses disability-related legislation
Fiscal year 2004, which began Oct. 1, will be nearly one-third over as Congress reconvenes this month. The Senate is expected to focus immediate attention on appropriations, but advocates also are watching a number of other disability-related bills in both the House and Senate.
Appropriations
In December, the House voted 242 to 176 to approve the fiscal year 2004 Omnibus Appropriations Bill, which outlines funding for virtually all federal disability programs. However, the Senate failed to pass the measure before adjourning at the end of the year.
In the meantime, all federal programs included in the omnibus bill are operating under a continuing resolution allowing them to spend money at 2003 levels. That resolution expires Jan. 31, meaning Congress must pass the appropriations bill or extend the resolution by that date.
Medicare reform
In early December, President George W. Bush signed into law the Medicare Prescription Drug, Improvement and Modernization Act of 2003. For more information, see page three.
Special education
The U.S. Department of Education released new rules regarding how students with disabilities are assessed under the No Child Left Behind Act. School systems may now count as "proficient" at least some students who take alternate assessments. The regulations cap this number of students at 1 percent of the total student body, which averages to about 9 percent of students enrolled in special education.
The Senate also will address special education this year as it explores the reauthorization of the Individuals with Disabilities Education Act (IDEA). Disability advocates prefer the Senate's bill (S. 1248) to the House version (H. 1350). The Senate is expected to continue its debate early this year, with both major political parties agreeing to a limit of four amendments each.
Other legislation
Other bills that could affect people with disabilities include:
- The Workforce Investment Act (WIA) and Rehabilitation Act (S. 1627) - Takes major steps toward increasing training and employment opportunities for people with disabilities.
- The Inclusive Home Design Act of 2003 (H.R. 2353) - Requires all new, federally assisted single-family houses to meet minimum visitability standards.
- The Family Opportunity Act (S. 622) - Allows middle-income families to purchase their state's Medicaid plan for children with disabilities.
- The Money Follows the Person Act (S. 1394) - Encourages states to allow money spent on a person in an institutional setting to follow that person as he or she makes a transition to home and community-based care.
- The Pathways to Independence Act of 2003 (S. 1523) - Allows states to consider participation in rehabilitation services as participation in work activities and considers time spent caring for a dependent with a disability as a work activity.
- The Lifespan Respite Care Act of 2003 (S. 538, H.R. 1083) - Authorizes grant funding to help families access quality, affordable respite care.
- The Transportation Equity Act (H.R. 3550) - Increases funding for transportation projects and authorizes new funding for community-based transportation programs for people with disabilities.
- The Social Security Protection Act (H.R. 743) - Makes a number of improvements to the Supplemental Security Income (SSI) and Title II programs, including improving protections for those with representative payees, creating additional resources to address fraud, and improving the attorney fee payment system.
Visit thomas.loc.gov to follow the progress of these and other bills.
Report identifies civil rights violations
In November, the American Civil Liberties Union (ACLU) released "HIV and Civil Rights: A Report from the Front Lines of the HIV/AIDS Epidemic," which outlines a pattern of civil rights violations against people with HIV/AIDS.
The report is based on interviews with more than 40 service providers across the country.
"Almost every agency told us that the biggest problems facing their clients involve meeting basic needs - coping with poverty, hunger, illiteracy, inadequate medical care, lack of transportation and homelessness," the report states. "In addition to those basic needs issues, people with HIV face a series of critical civil rights problems."
These problems include:
- Stigma and fear of disclosure.
- Violation of the right to medical privacy.
- Prosecution of those suspected of intentionally transmitting HIV/AIDS.
- Discrimination in employment, child custody and visitation, housing, and medical and psychiatric care.
The report also identifies issues specific to rural areas and the judicial system.
For a copy of the report, visit www.aclu.org or contact the organization at (212) 549-2627 (voice) or HIV@aclu.org (e-mail).
Housing program receives additional grant
The Indiana Housing Finance Authority (IHFA) awarded a grant for a second year of funding to the Council for the Back Home in Indiana Alliance, an organization that helps people with disabilities overcome barriers to homeownership.
Among those barriers is the lack of home modification services in Indiana. To help address that problem, the Alliance will conduct a series of home modification workshops for builders and contractors early this year (see chart).
"Home modification and universal design are so important," said IHFA Allocation Manager Erica Scott. "Builders and contractors should really take that into account."
At the beginning of the year, the Alliance also will repeat a series of regional workshops focusing on affordable rental and homeownership opportunities for people with disabilities and the state consolidated housing plan (see chart).
The IHFA grant also will be used to distribute publications designed to help people understand various housing programs. Available publications include "A Place to Call Home: Strategies for Affordable and Accessible Housing," "Understanding Disability-related Services and Supports: A Guide for Affordable Housing Professionals" and fact sheets on such topics as person-centered planning and guardianship as they relate to homeownership.
"IHFA is one of the few housing authorities in the country that has funded this kind of activity to target underserved populations," said Debra McCarty, project coordinator.
"I think they're to be commended for their leadership."The Back Home in Indiana Alliance is a project of the Indiana Institute on Disability and Community. For more information on upcoming workshops or available publications, contact the Center on Community Living and Careers at (812) 855-6508 (voice) or sredman@indiana.edu (e-mail).
| Upcoming workshops |
| Date | Location | Topic |
|---|
| March 11 | South Bend | Home Modifications |
| March 18 | Indianapolis | Home Modifications |
| March 19 | Terre Haute | Home Modifications |
| March 30 | Muncie | Home Modifications |
| March 31 | Muncie | Strategies for Affordable and Accessible Housing |
| March 31 | Seymour | Home Modifications |
| April 1 | Seymour | Strategies for Affordable and Accessible Housing |
Indiana family leads search for treatment, cure
When Phil and Tricia Milto's son, Nathan, was diagnosed with Late Infantile Batten Disease - for which there was no known treatment or cure - they refused to accept their doctor's grim prognosis. In 1999,the Hoosier family launched Nathan's Battle, which today is leading the charge to begin testing the kind of gene therapy scientists say could save Nathan, his brother P.J. and other children like them.
Late Infantile Batten Disease begins to affect children between the ages of 2 and 4. These children - about one in every 20,000 births, according to Phil Milto - usually die between the ages of 8 and 12. There are only 250 to 300 children in the United States with a confirmed diagnosis.
For those children, a successful treatment is closer than ever. Cornell University plans to begin human clinical trials, funded by Nathan's Battle, this year.
"We have a cure developed, tested and ready to be tried in patients," Milto said. "We're just waiting for regulatory approval." He estimates the organization will receive final approval no later than April.
Scientists hope a successful treatment eventually could be applied to about 40 other similar, rare diseases, such as Hunter Syndrome, Hurler Syndrome and Tay Sachs Disease.
To fund clinical trials, Nathan's Battle must raise $2 million over the next three years.
For more information or to make a donation, visit www.nathansbattle.com or contact the organization at (317) 888-7396 (voice), (317) 888-0504 (fax) or pmilto@indy.net (e-mail).
President signs Medicare reform bill into law
In early December, President George W. Bush signed into law the Medicare Prescription Drug, Improvement and Modernization Act of 2003, which affects about 6 million people younger than 65 with disabilities.
Some of the Act's provisions include:
- Launching optional prescription drug coverage in 2006.
- Eliminating Medicaid prescription drug wrap-around coverage for dual eligibles.
- Placing a two-year moratorium on caps for physical, occupational and speech therapies.
- Instituting a two-year demonstration project that would lift the Homebound Rule for about 15,000 beneficiaries.
- Establishing a pilot project, beginning in 2010, that will require Medicare plans to compete on price with private health plans in six metropolitan areas.
- Establishing a competitive bidding demonstration project in metropolitanareas for durable medical equipment.
- Freezing payments to providers of durable medical equipment.
- Allowing the establishment of tax-deferred health care savings accounts.
- Increasing funding to rural Medicare providers.
The details of the prescription drug benefit received a great deal of attention as the legislation was debated in Congress. According to the New York Times, Medicare beneficiaries who choose to participate will pay a monthly premium (estimated at $35) and a $250 annual deductible, with Medicare covering 75 percent of costs between $250 and $2,250. Above that amount, beneficiaries must pay 100 percent of their own drug costs, up to $3,600 out of pocket (for a total of $5,100 in costs). At that point, Medicare will pay 95 percent of costs under the "catastrophic coverage" provision.
Low-income beneficiaries will be able to purchase medications for $1 to $5 per prescription and will not pay deductibles or premiums.
Advocates still are examining the details of the final bill to determine its potential impact on people with disabilities. Visit thomas.loc.gov to view the final version.
Council presents annual media awards
The Council partnered with Ball State University and Indiana University to honor several journalists with the Award for Excellence in Reporting on Disability Issues at the 2003 Indiana Conference for People with Disabilities.
The winner in the broadcast category was Norm Cox of Indianapolis television station RTV-6. His piece on the Council's Count Us IN project highlighted the significant issue of polling place accessibility.
In the print category, judges honored reporter Jerry Davich and photographer Tracy Albano of the Times in Munster, Ind., for a story package exploring the deaf culture in northwestern Indiana. The feature also included a full page of photos, as well as relevant sidebars and a timeline of deaf culture.
Scott MacGregor of the Indianapolis Star received an honorable mention in the print category for his series of articles explaining the Medicaid waiver program.
Nominations for future media awards may be submitted to Ashley Petry, Borshoff Johnson Matthews, 47 S. Pennsylvania St., Suite 500, Indianapolis, IN 46204. For more information, contact Ashley at (317) 631-6400 (voice) or apetry@bjmpr.com (e-mail).
Of Note
Count Us IN countdown
The deadline to register for the May 4 primary election is April 5.
Save the date!
The 2004 Conference for People with Disabilities will be held Nov. 8-9.
Disability Social History Project now online
The Disability Social History Project is "an opportunity for people with disabilities to reclaim our history and determine how we want to define ourselves and our struggles," according to its mission statement. Visit the Web site, www.disabilityhistory.org, for links to art, culture, research, advocacy and historical information.
Order Disability Awareness Month materials now
Materials are now available for Disability Awareness Month 2004. Visit www.in.gov/gpcpd to download an order form or contact Kim Dennison at Borshoff Johnson Matthews, 47 S. Pennsylvania St., Suite 500, Indianapolis, IN 46204; (317)
631-6400 (voice); (317) 631-6499 (fax); or kdennison@bjmpr.com (e-mail).
Free booklets on Indiana's legislative process
The Council's updated "Legislative Process" brochure provides basic information on the legislative process and how to communicate with legislators, as well as useful resource information. To receive free copies, contact the Council at GPCPD@gpcpd.org (e-mail), (317) 232-7770 (voice) or (866) 234-1635 (toll-free).
Organization offers role valorization workshops
The Indiana Safeguards Initiative is offering a three-day workshop, "Crafting Valued Social Roles," Feb. 10 -12 at the Entrepreneur Business Center in Indianapolis. Participants will explore the concept of Social Role Valorization through lecture and discussion. To register, call (317) 264-0423 (voice).
Conference Insert
2003 Indiana Conference for People with Disabilities
Dec. 2-3 at the Westin Hotel, Indianapolis
Keynote speakers help spark 'community spirit'
The 2003 Indiana Conference for People with Disabilities welcomed a number of powerful keynote speakers. Although each lives her advocacy in a different way - as an author, dancer or CEO - each shared moving stories that inspired conference attendees and helped spark community spirit.
ADA only the beginning of disability movement
Marca Bristo, president and chief executive officer of Access Living and former chairperson of the National Council on Disability, kicked off the conference Tuesday morning with a message about the importance of advocacy.
Recounting the life stories of disability rights leaders, Bristo encouraged people with disabilities to become more active advocates.
"Those pioneers knew what they went through was wrong, and they had the boldness and the audacity of spirit to believe America's principles should apply to them, too," she said.
While the passage of the ADA was a victory, it was only the beginning, Bristo said, citing numerous examples of continuing discrimination. She presented five "E" words to consider as people with disabilities continue their journeys of advocacy:
- Empowerment - People with disabilities must have a sense of conviction about their advocacy.
- Enforcement - "If we don't use the laws, who will?"
- Education - SSI and other public support "should not be the career path for children with disabilities."
- Economic justice and employment - People with disabilities have both a right and a responsibility to work.
- Elections - People with disabilities are "the sleeping giant of American politics."
Finally, Bristo encouraged conference attendees to take advantage of every opportunity to be an advocate.
"There are only so many moments in time when we have the nexus of both opportunity and resolve. I believe we have that here," she said. "Your work is big, your souls are great, and your ability to shoulder this weight is enormous."
Wallace embraces her disability
Alana Yvonne Wallace began her speech at Tuesday's luncheon with a monologue about how she learned to hide her disability as a child. Her advice now: "Three snaps and get over it!"
Wallace is the founder and artistic director of Dance>Detour, Chicago's first mixed-abilities dance company. She said this career helps her and others embrace her disability; she likes looking and moving differently.
Wallace said artists with disabilities face several obstacles:
- Funding - All artists and arts programs lack funding.
- Attitudes - People think people with disabilities don't belong in the arts. For example, casting directors resist employing people with disabilities in parts that are not disability-specific.
- Exploitation - Organizations may involve a person with a disability once so they can claim they are totally inclusive for grant purposes.
- Income restrictions - People with disabilities have to be cautious about making too much money, which may lead to losing benefits.
- Lack of role models - Not many role models with disabilities are active in the arts.
In her remarks, Wallace encouraged everyone to "never be afraid to dream big."
Learning disability lessons on the bus
When Rachel Simon learned that her sister Beth, who has an intellectual disability, spent her days riding buses around the city, her initial reaction was embarrassment and confusion. It wasn't until she joined Beth on those buses that she realized her sister had found both independence and true community participation as she circled the city.
During Wednesday's awards luncheon, Simon, author of Riding the Bus with my Sister:
A True Life Journey, shared her story about sibling relationships, disability and learning to let go. Riding buses with Beth helped Rachel to see that she could not help her sister by controlling her; rather, she should trust and support Beth in making her own decisions.
"Support people in dreams that will make them smile," she said.
Workshops focus on major disability issues
Pursuing the arts as a profession
This workshop's standing-room-only audience heard from a variety of arts professionals about starting and maintaining a career in the arts.
Paul Neufelder, a painter from southern Indiana, emphasized that artists "must love what they do and not be willing to stop." He stressed that artists must know themselves well. But most importantly, he said, "Smile! You're doing what you love."
Scotty Zwicker, an art teacher at the Indiana School for the Deaf, stressed that everyone has unique skills that should be recognized. Zwicker described Hands Alive!, a visual performing arts organization emphasizing sign language and deaf culture.
Nancy Barnett, a special education teacher from Muncie Southside High School, spoke about I CAN, an initiative she started 10 years ago through which students with disabilities make products to sell in a school store they also manage.
Alana Yvonne Wallace, founder and artistic director of Dance>Detour, accented the need for artists to be adaptive, versatile and resourceful.
Community partnerships for access and worship
People with disabilities often are denied the right to participate fully in their communities. At this workshop, two representatives from the National Organization on Disability (N.O.D.) discussed ways to help improve the situation.
Nancy Starnes, N.O.D. vice president and director of community partnership programs, discussed the Accessible America competition. Ginny Thornburgh, director of the N.O.D. Interfaith Religion and Disability Program, focused on making congregations more accessible.
Thornburgh's recommendations included placing people with disabilities in visible leadership roles, training greeters and ushers to assist people with disabilities, forming a task force on accessibility issues, instituting a valet parking system and providing accessible bulletins that omit phrases such as "all stand" and "all kneel."
Help America vote - Every Town, Indiana
This workshop focused on the sweeping election reforms outlined by the Help America Vote Act (HAVA). According to panelists, people with disabilities are now in a strong position to get involved in the voting process and "be counted."
Indiana Secretary of State Todd Rokita outlined upcoming election changes, including making voting equipment more accessible for people with disabilities. In addition, he discussed a survey being conducted by the Council's Count Us IN project that will help to determine the full accessibility needs of each precinct and identify poll worker training needs.
Brad King, of the Indiana Election Division, discussed the HAVA mandate that each precinct establish a local advisory council comprised of people with disabilities and the elderly.
Jim Dickson, of the American Association of People with Disabilities, congratulated Indiana for being a national leader in election reform. Among state HAVA implementation plans, he said Indiana's plan ranks among the top three.
Julia Vaughn, project director for the Council's Count Us IN project, discussed poll worker training and reemphasized the need for people with disabilities to be counted.
"This is a civil rights issue," she said. "There's a perception among election officials that people with disabilities aren't out there and that their state is spending a lot of money on election reforms to benefit just a few people. You have to get involved to be counted."
Rebalancing the community care system - our state's story
An impressive group of speakers presented this workshop to a packed room.
Katie Humphreys, chairperson of the Governor's Commission on Home and Community Based Services, focused on why Indiana has been slow to improve the community care system, citing political reasons and provider interests. Suzanne Clifford, director of the Division of Mental Health and Addiction at the Indiana Family and Social Services Administration (FSSA), discussed why a growing number of people are seeking treatment for mental health and addiction.
Mike Hedden, director of FSSA's Bureau of Rehabilitation Services, spoke about the power of advocacy in changing the system.
Steve Cook, director of FSSA's Division of Disability, Aging and Rehabilitative Services, discussed the 317 Plan.
Plenary session highlights areas of concern
The conference welcomed two distinguished speakers to its Wednesday morning plenary session. Disability rights attorney Stephen Gold, J.D., focused on housing issues, while David Braddock, Ph.D., addressed the "State of the State of Developmental Disabilities."
Get involved in housing planning
"All public housing decisions are political, meaning they're open to your input if you're organized," Gold said. He encouraged conference attendees to research and understand housing programs, funding and requirements to become more effective advocates.
Gold said housing for people with disabilities should meet three criteria: affordability, accessibility and integration. Some sources of such housing include public housing, Section 8 housing vouchers, multi-family subsidized housing, low-income housing tax credits (LIHTC) and private housing units.
A state and/or local housing authority's consolidated plan usually is a good source of information, Gold said. It can help advocates determine if their needs are being addressed in the planning process and whether plan components are being implemented. Disability advocates also can impact the content of the plan during the public hearing process.
Indiana's progress toward home and community-based care
Based on the research report, "State of the State of Developmental Disabilities," Braddock covered trends in MR/DD services, providing a cross-disability perspective.
According to recent "State of the State" data, Indiana ranks 33rd in the nation in the number of people with disabilities living in homes with six or fewer residents and ranks 49th in the nation in the percentage of spending allocated for these types of settings. About 20 percent of people served live in private ICF/MR facilities with seven to 15 residents (compared to 5 percent nationally). In addition, Indiana has the highest rate of nursing home placement in the nation.
Braddock also had good news to share. Indiana has increased its funding for home and community-based services significantly in recent years, with waiver spending expected to surpass ICF/MR spending for the first time this year.
Other issues included support staff wages, aging caregivers, family support, supported employment and the cost of nursing home placement. Braddock encouraged conference attendees to form cross-disability coalitions to address these issues.
"People across the spectrum of disability must raise hell collectively," he said. "They can divide us up and will if we let them."
Indiana Governor’s Planning
Council for People with Disabilities
150 West Market Street, Suite 628
Indianapolis, Indiana 46204
(317) 232-7770 voice
(317) 232-7771 TT
E-mail: GPCPD@gpcpd.org
Web site: www.state.in.us/gpcpd
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