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 |
U.S. Congress addresses disability-related issues
Advocates at the federal level are fighting to preserve the Medicaid budget as the Senate and House of Representatives move forward with the federal budget bill for 2004.
The Senate version of the bill allots $12.78 billion for Medicaid reform as part of the New Freedom Initiative. However, the tax cuts included in President Bush's economic stimulus package seem likely to result in cuts to federal Medicaid spending and are strongly opposed by many disability advocates.
Some advocates are requesting a temporary increase in the federal contribution to Medicaid as states struggle to maintain the integrity of Medicaid programs and services amid budget cuts. There is some support from legislators - 79 of 100 senators have signed a letter stating that federal funding reductions to Medicaid would force states to restrict eligibility, reduce health benefits or freeze provider reimbursements, according to the ARC's "Capitol Insider" report.
The budget bill was sent to conference committee in early April to allow legislators to iron out differences between the House and Senate
versions. The final budget includes:
- no required cuts to Medicaid, SSI, or other entitlement programs;
- discretionary spending limits of $784 billion: $400 billion for defense and
$384 billion for non-defense (levels similar to President Bush's fiscal year [FY] 2004 budget request);
- $400 billion for Medicare reform, including a prescription drug benefit;
- a reserve fund for Medicaid reform, with sufficient funds to implement the Administration's block grant proposal;
- a reserve fund to implement the Family Opportunity Act, if enacted;
- a reserve fund for the extension of expiring State Children's Health Insurance Program (SCHIP) funds; and
- $2.2 billion for FY 2004 and $2.5 billion for FY 2005 for the Individuals with
Disabilities Education Act (IDEA) state grants.
Governor O'Bannon is one of nine governors taking part in the National Governors Association (NGA) Medicaid Reform Task Force, which is discussing strategies
for reforming the nation's Medicaid program. Some of the issues being addressed include prescription drug benefits, Medicaid waivers, public and private sector partnerships, and eligibility determinations.
Another issue of concern on the federal level is the reauthorization of IDEA. House Resolution 1350 is strongly opposed by most disability advocacy organizations.
According to the Disability Rights Education and Defense Fund's (DREDF) IDEA Rapid Response Network, new provisions in HR 1350 would:
- punish children with disabilities for disability-related behaviors;
- remove IDEA's civil rights protections; and
- deny children with disabilities appropriate support to succeed in school.
As passed by the House, HR 1350 represents an unprecedented erosion of children's and parent's rights under IDEA. Parents would be faced with numerous and potentially confusing options if they wish to pursue due process, while key provisions that protect children in disciplinary actions are removed.
The next step is consideration of IDEA legislation by the Senate, which is expected to introduce its bill later this month. Both Democrats and Republicans on the Health Education Labor and Pensions Committee agree on the need to reduce paperwork and track academic progress among students with disabilities, but will probably leave the most contentious issues, such as vouchers and
student discipline, for a vote by the full Senate.
You can follow the progress of federal legislation at http://thomas.loc.gov.
New cochlear implants
Advanced Bionics has introduced a new cochlear implant design that is more effective and safer to use than previous models.
The new design allows people to distinguish sounds such as musical tones more clearly.
"Users could hear sounds with our previous model, but now they can hear musical instruments like the guitar," the company's director of marketing told The New York Times.
The new design also responds to last year's meningitis scare, when four implant recipients contracted the potentially deadly disease. Unlike the previous model, the new design does not crowd the cochlea, a spiral duct that connects to the hearing nerve. Company researchers believe this crowding caused the illness.
For users of the previous model, Advanced Bionics recommends a meningitis vaccine and will reimburse those whose insurance companies will not pay for the vaccination.
Cochlear implants continue to be controversial in the deaf community because the devices imply that being deaf is a "problem to be fixed." But more than 40,000 Americans and 25,000 international users have received the implants, which are especially popular among those who lose their hearing later in life.
Fifth Freedom seeks volunteers
Fifth Freedom Network, a Council project, has launched a new advocacy tool for Hoosiers with disabilities: ACT Teams (Advocacy Coordination Teams).Team members receive advocacy alerts from local team leaders, enabling them to immediately address disability-related legislation, policies and other issues.
Fifth Freedom's mission is to establish a statewide consumer network for people with disabilities to create systems change in Indiana.
"These teams are a small network of grassroots groups around the state taking action on local, state and national disability issues as they occur," said Fifth Freedom Director Sheri Caveda. "The teams create a strong, unified, cohesive political voice for issues that affect people with disabilities."
Fifth Freedom developed the program to provide advocates with the knowledge they need to be effective.
"We knew we wanted to do something more than just a phone tree to connect advocates across the state," Caveda said, "and we wanted something without geographic limitations."
To make ACT Teams even more effective, Fifth Freedom has hired former Council board member Karen Vaughn as the program coordinator.
"We're very excited because Karen is such a gifted and appropriate person to coordinate local team leaders," Caveda said.
To get involved in a local ACT Team, request an application toll-free at (866) 441-2577 (voice) or (800) 889-3443 (TT).
New visitability standards for private homes
As more people with disabilities move into the community, it becomes more important than ever that private housing be accessible. A new state Senate Bill, SB 354, provides guidelines, or "visitability standards," for contractors to follow when building accessible single-family and town homes. If passed, Indiana will be the first to implement those standards statewide.
In order for a home to be labeled "accessible," the Bill would require that homes include at least one no-step entrance, larger bathrooms with reinforced walls for future installation of grab bars, a bedroom on the first floor, and wide doorways and hallways.
"People need to understand that these standards are optional, contingent upon
the individual asking their contractor for a building plan that is accessible," said Cris Fulford, government affairs director of ATTAIN, Inc. and COVOH, Inc. "There will have to be a significant consumer awareness campaign to get the word out about these new standards."
Many advocates in Indiana and across the country are calling for visitability standards for new accessible single-family homes. Advocates remind legislators that many people will need home modifications as they age, so accessible housing would benefit everyone, not just people with disabilities.
People age 50 and older make up more than a third of the population, and that number will double in the next 35 years. According to AARP, 85 percent of older people want to continue living in their current homes. But without standards for accessible housing, it may be impossible for many to do so.
To find out what happened to SB 354 and other bills, visit www.in.gov/serv/lsa_billinfo.
Support services waiver already at capacity
Last April, advocates praised a state decision to create a Support Services Medicaid waiver. Now, barely one year after the program was initiated, there is already a waiting list.
The Support Services waiver isn't as comprehensive as the Home and Community-Based Services (HCBS) waivers, but provides much-needed support for those on waiting lists for the more comprehensive HCBS waivers. Those who are eligible for the Support Services waiver can receive up to $13,500 per year in support services.
The Support Services waiver program is designed to eventually give an additional 7,000 people services over a three-year period - up to 2,333 people in year one, increasing to 7,000 people by year three. As of March 1, all slots for year one were filled. While the Family and Social Services Administration (FSSA) is still accepting applications for the waiver, it has informed regional Bureau of Developmental Disabilities Services offices that applicants may be wait-listed.
The situation is compounded by the high probability of impending budget cuts to optional Medicaid services, including waivers. Not only is the waiver program at capacity with its current budget, it may soon have an even smaller budget to serve people with disabilities across the state.
About 800 people now have approved plans of care under the waiver program and another 600 application approvals are pending. Many potential waiver recipients are already receiving services through Title XX (for adult day services), which is less comprehensive and completely state funded. The state could save money and help additional people if those who are currently receiving Title XX
dollars begin using waivers, a majority of which are federally funded.
"The state saves money, our federal tax dollars are brought back to Indiana and new people ...have finally been able to get some help," stated the ARC of Indiana.
For more information on the Support Services Medicaid waiver, contact your local Bureau of Developmental Disabilities Services office by calling toll-free, (800) 545-7763 (voice).
Information network offers parent support
The Indiana Parent Information Network (IPIN) addresses the unique needs of parents of children with disabilities by connecting them with parent liaisons who have had similar experiences in raising their own children.
"The number one need of families is the need for information," said IPIN Executive Director Donna Olsen. "We believe other parents of children with disabilities are a good source of information about practical ways to access community resources."
IPIN receives more than 1,500 calls per year from families seeking information and support for children with disabilities and chronic illnesses.
To serve those families, the organization provides information, peer support and training for families with children as old as 22. IPIN offers quarterly newsletters, a resource database and training workshops, as well as statewide directories of support groups, family leaders and resources for children with disabilities.
Upcoming training topics include special education, financial case management and health insurance.
For more information, visit www.in.gov/ipin or call toll-free, (800) 964-IPIN (4746) (voice).
Council seeks On Target article suggestions
Do you have a story idea you think would be perfect for On Target? We want to hear from you! The Council is always seeking ideas for exciting, relevant articles.
Let us know if you'd like to learn more about specific issues, legislation or court cases that could affect people with disabilities. Tell us if your organization is holding an event or workshop that other advocates and people with disabilities might be interested in. Is a unique person or program in your community making a difference for people with disabilities? We'd love to hear about it!
Your suggestions will continue to make On Target a valuable resource for people with disabilities across the state.
Please send article suggestions to Angi Taylor at ataylor@bjmpr.com (e-mail), (317) 631-6499 (fax) or Angi Taylor, c/o Borshoff Johnson Matthews, 47 S. Pennsylvania St. Suite 500, Indianapolis, IN, 46204.
Of Note
Medicaid Action Center
Families USA has created an online Medicaid Action Center to help people with
disabilities and their families understand the Bush administration's proposed changes to Medicaid. Visitors to the site can access a variety of Medicaid information and resources, including tools to help fight Medicaid budget cuts on the state level. Visit http://fusa.convio.net/Medicaid_Action
Survey of minorities with disabilities
The Indiana Institute on Disability and Community's Center for Planning and Policy Studies is recruiting people with disabilities from the Latino/Hispanic, African-American and Asian-American communities to participate in an employment survey. The statewide survey, sponsored by Vocational Rehabilitation, will assess the employment needs of Hoosiers with all types of disabilities. If you or a family member belong to one of these minority groups and would like to volunteer, call toll-free (800) 437-7924 (voice) or send an e-mail to cpps@indiana.edu.
FSSA Web site updates
The new BDDS/Waiver services application is now available on the Indiana Family and Social Services Administration (FSSA) Web site. Additionally, information about the pro-vider approval process and a list of resources for targeted case managers and providers is now on the Web site. If you are interested in becoming a provider, visit the FSSA Web site at www.in.gov/fssa/servicedisabl/provider/providerapproval.html
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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