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for the Blind

Expanding possibilities for people with vision loss

National Aging and Vision Network Work Group, March 6 & 7, 1999

Report from the Josephine L. Taylor Leadership Institute 1999

Chapter 2 Advocacy Efforts

Participants heard from Judy Scott regarding the Network's advocacy campaign efforts for 1999 and for FY 2000. Judy distributed updated Advocacy Tools kits which include national fact sheets, lists of key Congressional committee members, a position paper on Chapter 2 and other relevant materials. The National Aging and Vision Network, working collaboratively with other groups, such as the National Council of State Agencies for the Blind (NCSAB) and the American Council of the Blind (ACB), will be asking Congress for $26 million in funds for Title VII, Chapter 2.

With the help of RSA, a state-by-state projection has been prepared showing each state's funding level should the $26 million goal be achieved. Projections were also prepared for each state at the $13 million, the trigger amount for formula funding of states through Chapter 2, and at $11.4 million as proposed by the Administration's budget request.

Scott Marshall, Vice President, AFB Governmental Relations Group, spoke to the group about AFB's new legislative focus on Chapter 2, and the hiring of Washington lobbyist/consultant, Mike Hall, as a consultant on the campaign to raise Chapter 2 funding. He explained that under Hall's guidance, advocates will be asked to identify champions for the increased funding request, from House and Senate Subcommittees on Labor, HHS, and Education. In addition, exemplary programs from the champions' states will be highlighted in the advocacy efforts.

He explained that this effort is on a very fast track since the Senate has already held its hearings and House members are preparing their "short lists" for what they will be supporting in the appropriations meetings.

Lorraine Lidoff, Director, National Vision Rehabilitation Cooperative, explained that the Lighthouse is in the process of hiring a lobbyist as well to promote health system reimbursement for vision rehabilitation services.

What is important is that both these advocacy efforts are extremely critical. Securing additional money for Chapter 2 is a short range effort, while securing reimbursement from the health system is a long range objective.

Lessons from the National Council on the Aging (NCOA) Task Force on Alzheimer's Disease

Alixe McNeill, Assistant Vice President for Program Development, described the purpose of the task force and the steps NCOA has followed in its implementation to increase public awareness about Alzheimer's disease. The task force is a group of 30 organizations in the aging field which have a interest in public education regarding Alzheimer's disease. The pharmaceutical firm, Novartis, which is involved in developing medications to alleviate the symptoms of the disease, underwrote the budget for the task force, including the development and implementation of a national survey about public and caregiver knowledge. NCOA and the other organizations hope to launch a major public education effort based on articles on the survey findings to be published in reknown medical publications.

Ms. McNeill discussed how NCOA has used the partnering approach to involve other organizations interested in similar causes and the private sector to carry out important initiatives such as the Alzheimer's project. She also mentioned NCOA's leadership in providing the basis for a national network of senior advocacy organizations. She suggested educational programs/kits which NCOA has developed on a variety of topics and suggested participants might want to review these materials. Additionally, she discussed the possibility of the Network getting involved in a Washington, DC based aging/disability coalition of which NCOA is a member. Finally, she welcomed the exploration of partnering with the Network on issues of aging and age-related vision loss.

The International Year of the Older Person

Dr. Alfred Rosenbloom, Director, Low Vision Service at the Chicago Lighthouse, reviewed with the group a resolution the American Optometric Association has just written in support of the United Nations International Year of the Older Person. Participants enthusiastically endorsed the concept of the Network taking a similar approach. The information will be discussed with the National Agenda Steering Committee for a decision on how to proceed.

National Agenda on Vision and Aging

Alberta Orr discussed the purpose and goals of the National Agenda on Vision and Aging and introduced the Agenda's Steering Committee members as follows: LaDonna Ringering, National Council of Private Agencies for the Blind and Visually Impaired; William Casto, National Council of State Agencies for the Blind; Charles Crawford, Executive Director, American Council of the Blind (ACB); Teddie Remhild, President, Alliance on Aging and Vision Loss, ACB affiliate; Tom Miller, Executive Director, Blinded Veterans Association; Kathy Gallagher, National Industries for the Blind; J. Elton Moore, Director, Mississippi State University RRTC; Lorraine Lidoff, Director, National Vision Rehabilitation Cooperative; Barry Stephens, Chair, AER Division 15 (Aging); Lynda Jones, Chair Elect, AER Division 17 (Personnel Preparation), and Tom Perski, Executive Director, Macular Degeneration International.

Teddie Remhild and LaDonna Ringering presented progress on the National Agenda since the 1998 JLTLI meeting. Work group participants then divided into the 7 goal areas for discussion of milestones to be reached for each goal for FY 2000, and in preparation for the aging work group sessions at JLTLI 2000. Their recommendations are included in this report.

Note:

The facilitators listed are those individuals who facilitated the breakout sessions at JLTLI, but are not necessarily the overall goal leaders.

Each of the work groups completed the work group form a little differently, thus the differences in language and reporting on the categories.

Goal #1: Develop Self-Advocacy Skills Training Materials

Facilitators: Teddie Remhild and Laura Mahler

The working group decided that their first task was to define the meaning of self advocacy: self-advocacy begins with the individual's day-to-day activities and leads to the development of the core group's national issues. Without self-advocacy skills, older individuals are unable to "fend for themselves" in their every day world. These skills are basic to the development of the self-esteem and level of self-confidence needed to function well in the community, and to become interested in larger issues such as participating in advocacy efforts for Chapter 2 increases. One of the major tasks for the coming year will be to gather and review information about any advocacy skills training programs or materials already being used to teach older persons who are visually impaired.

The goal is to develop an advocacy skills training curriculum for use across the country so that older people receiving vision-related rehabilitation services will receive training in self advocacy prior to the completion of their rehabilitation program.

  1. Milestones for JLTLI 2000

    1. Identify advocacy skills needs of older people by contacting consumers through national publications such as those disseminated by ACB, NFB, and BVA.
    2. Identify self-advocacy programs and materials already in existence.

  2. Activities

    1. Request national consumer publications to disseminate articles/surveys regarding self-advocacy.
    2. Contact organizations/agencies regarding existing materials on self-advocacy.
    3. Request information from Network members regarding self-advocacy tools they are already using.
    4. Complete a report on the materials gathered by September, 1999.

  3. Key players to involve

    1. Organizations: Lighthouse, ACB, AFB, NFB, NCOA, AARP, AER, NCSAB, NCPAB, BVA, and other similar organizations.
    2. Individuals: Doris Westfall, Roberta McCall-Gaither, Molly Morell, Scott Gilbertson, Teddie Remhild, Laura Mahler (Individuals present at work group session.)

  4. Funding

    Conference calls to discuss results of individuals' findings and reports.

  5. Impact

    Short term: More people will be aware of options and opportunities open to them.

    Long term: Development of a self-advocacy skills training program which can be distributed to agencies and groups nationwide.

Goal #2: Increase Public Awareness

Facilitators: Gerry Niedermaier and David Ekin

This breakout group identified several different constituencies that need to be addressed strategically. The main target audiences for increasing awareness were seen as:

  1. Medical community
  2. Allied health professionals
  3. Family members
  4. General public

Ideas which were generated included developing Fact Sheets (Your Aging Parents, Lighthouse study & other research), being more involved in coalitions (Area Agencies on Aging, Meals on Wheels, Alzheimer's, home health, etc.) on both national, state, and local levels, getting information into corporate newsletters to employees, and possibly including information in mail inserts (banks, utility bills).

It was also felt that education about the "range" of degrees of vision loss would be important along with functional implications. There was also discussion of several things that have been successful on local and state levels represented by members of the group.

  1. Milestones for JLTLI 2000

    1. Increase awareness of allied health professionals, community service providers, and family caregivers about the availability of vision rehabilitation programs.

    2. Increase awareness of the general public about age-related vision loss and the eye conditions associated with aging.

  2. Activities

    1. Develop fact sheets about vision rehabilitation services which can be used on a national basis which AFB and other national organizations can distribute. These fact sheets would be available on disk, formatted and ready for print so they can be easily reproduced.

    2. Develop fact sheets with individual state information about vision rehabilitation services available in each state which can be distributed by state and local organizations. These fact sheets should be available on disk, formatted and ready for print so they can be easily reproduced.

    3. Consider writing and placing articles in corporate newsletters.

  3. Key Players to involve

    1. Organizations

      National aging organizations
      State aging organization
      Health districts
      Allied health professions
      Corporate newsletters for family care givers (Dave Ekin and Judy Scott to discuss with SW Airlines and Southwest Bell)
      Insurance companies
      Hospital personnel

    2. Individuals

      Alberta, Judy, and Pris to make national contacts. Chapter 2 and private agency directors will need to make state and local contacts.

  4. Funding

    Cost of disks, postage, and printing.

  5. Impact

    Improve the ability of older individuals with visual impairments and their families to match needs with appropriate resources.

  6. Long-term Milestones

    1. Develop Vision-Aging web site for fact sheet information and other pertinent info targeted to family caregivers and allied health professionals. (Possibly underwritten by pharmaceuticals or low vision industry in return for advertising).

    2. Develop large print fact sheets on the side effects of drugs/meds.

    3. Enlist Dr. Pearle of Pearle Vision for help in promoting public awareness.

    4. Develop video on Aging and Vision for PBS/cable which would include information regarding eye conditions, treatment, rehabilitation.

    5. Find and recruit a national spokesperson for vision and aging issues.

    6. Re-release AFB's Public Service Announcement on Aging.

Goal #3: Access to Vision Rehabilitation Services through Adequate Public Funding

Facilitators: Jules Cote and Frank Synoground

Since the 1992 re-authorization of the Rehabilitation Act, there has been an active but unsuccessful effort to achieve the $13 million threshold that Congress established as the trigger level for Title VII, Chapter 2 formula funding. Even though slight but steady gains have been made, the trigger level has not been realized. Rather than being discouraged, the group heartily endorsed efforts to reach, and even exceed that level. This year it was agreed to ask Congress for $26 million and to achieve it using the strategies outlined below.

  1. Milestones for JLTLI 2000

    1. Identify champions from House and Senate for the Chapter 2 Program. (The Program has not had a true "champion" since Congressman Ed Roybal of California led the initial effort that got the Older Blind Services funded for the first time in the middle 1980's).

    2. Increase appropriations for Chapter 2 to $26 million.

  2. Activities

    1. Identify the states with key Congressional members.

    2. Identify and enlist individuals within those states, for example, direct service providers who know persons who could get the ear of a key Congressional member. Convince them to become an advocate for the Chapter 2 program. Such intermediaries might be family members, friends, former legislative peers, etc. who have received and know the value of Chapter 2 services.

    3. Enlist the support of consumer groups, interest groups, professional organizations, etc. to work on key Congressional members.

    4. Develop state "action" committees in key states (including consumers) to rally awareness of the need for vision-related rehabilitation services and raise state dollars (these will be needed to meet increased Chapter 2 match requirement).

  3. Key Players to Involve

    Organizations

    Consumer groups (national and local), professional interest groups (e.g. AER chapters, optometric associations), community based not-for-profit agencies. Involving these groups will bring credibility, power, and a louder voice to legislators.

  4. Funding

    No additional funding is needed for this effort.

  5. Impact

    1. Champions will produce a heightened awareness of need for Chapter 2 and their support of the National Agenda.

    2. Increased appropriations; increased ability to provide services.

    3. Greater awareness of needs of older individuals who are blind or visually impaired.

  6. Long-Term Milestones

    1. More adequate funding for Chapter 2.

    2. Increased state and local funding for Chapter 2.

    3. Development of collaborative relationships with other "aging" organizations.

    4. Support of a parallel effort at the state level to garner state funding in excess of the local match.

Goal #4: Increase the Supply of Qualified Personnel

Facilitators: Lynda Jones and Pat Smith

This working group was concerned about (1) the critical shortage of "qualified" personnel (those with sufficient education to provide instruction in daily living skills and adjustment to vision loss to older individuals), working with older persons who are visually impaired, and (2) the decreasing funding available for both in-service and pre-service training.

Funding for specialized training has decreased substantially over the last 3 years while the number of older persons requiring services has increased dramatically. The group felt it is critical to work on efforts to increase funding while also developing a nationally accepted job description for "qualified personnel" to work with older persons with visual impairments.

  1. Milestones for JLTLI 2000

Milestone (a). Identify and define what is meant by "qualified personnel."

  1. Activities

    1. Request job descriptions and hiring requirements from state agencies.

    2. Identify similarities in current job descriptions.

    3. Define "qualified personnel" based on AER guidelines and the Rehabilitation Act.

  1. Funding

    Funds for postage, supplies, teleconferencing

  2. Impact

    Baseline information will be compiled on current personnel situation.

Milestone (b). Obtain information on training needs.

  1. Activities

    1. Attend/present at CSAVR, NCSAB, and NCPAB.

    2. Increase recruitment activities for existing personnel preparation programs.

    3. Share existing training options.

    4. Discuss training needs.

    1. Funding

      Travel to national meetings, supplies and postage.

    2. Impact

      Information available on existing training options for report at JLTLI 2000.

Milestone (c). Increase awareness of the need for qualified personnel among state and federal legislators.

  1. Activities

    1. Inundate legislators with letters describing the need for training preparation programs.

    2. Educate aging network organizations about this need.

    1. Funding

      Postage and supplies.

    2. Impact

      More qualified personnel; Long-term: more funding and more awareness.

Milestone (d). Contact federal officials and other individuals involved with program funding.

  1. Activities

    1. Obtain meeting with Fred Schroeder, Tim Mussio, Judy Heumann, and Dr. Al Rosenbloom.

    2. Present crisis in funding needs.

    3. Apply CSPD to all professions in the field such as O&M and RT.

  2. Key Players to Involve

    1. Rehabilitation Organizations
      AFB, AER, NCSAB, NCRE, NCPAB, and RSA

    2. Other Organizations
      Aging network organizations

  3. Funding

    Supplies, postage, and paper.
    Telephone conferencing.
    Travel to attend meetings of NCSAB & NCPAB and with federal officials.

  4. Impact

    1. Improved quality of hiring requirements resulting in an increased number of "qualified" personnel providing services.

    2. Established standards and certification requirements--setting standards.

    3. Standardized definition of qualified personnel.

    4. Increased funding for personnel preparation.

      (1) Increased federal, state, and private dollars available for pre-service and in-service training.
      (2) Revised guidelines for funding so that 75 percent of funds do not have to go to student stipends, and more can be spent for faculty.

Goal #5: Expand Access to Information, Employment, Community Resources, and Transportation

Facilitators: Kathy Gallagher and Carroll Jackson

The working group concentrated its efforts on developing milestones on access to information and to employment, feeling that transportation access is an issue which must be attacked at a macro level.

  1. Milestones for JLTLI 2000

Milestone (a). Evaluate the effect local PSAs have had on enhancing awareness of services available to individual who are older and blind. Then determine if a national PSA should be recommended.

  1. Activities

    1. Survey local agencies to determine what PSA's they have used and determine effectiveness.

    2. Review results of AFB's PSAs. Compile recommendations to be presented at JLTLI 2000 regarding a national PSA.

  2. Key Players to Involve

    Members of the Cooperative and/or NCPAB

  3. Funding

    Minimal funding for phone calls.

  4. Impact

    Information needed to develop national PSA to increase awareness and visibility, and thereby heighten independence for older persons who are blind.

Milestone (b). (Contingent on the availability of funding.) Develop and implement a pilot study to identify the factors which contribute to individuals age 55-65 who are blind or visually impaired persons staying active and employed at the onset of vision loss versus individuals who retired upon the onset of vision loss.

Alternative: Develop a pilot project to study the differences in the quality of life for persons age 55-65 who are blind or visually impaired who are employed versus those who retired when they experienced vision loss.

  1. Activities

    1. Identify state(s) in which to conduct the study. Determine protocol for carrying out study.

    2. Collect information and have draft of study prepared for JLTLI 2000.

  2. Key Players to Involve

    Carrying out this study may involve working with: RSA, the RRTC, the VA, NCPAB, and the Cooperative.

    Possibly a graduate student from the RRTC could be used to carry out the study.

  3. Funding

    Possibly funding for student stipend, costs of survey, and costs of data analysis. The latter might be an inkind contribution.

  4. Impact

    More information about the effect of employment on quality of life. May lead to more attention on employment of older persons who are blind or visually impaired.

Milestone (c). Create partnerships with organizations responsible at the national level for employment and/or job training for older or disabled workers to determine how to increase access to employment for older persons who are blind or visually impaired.

  1. Activities

    Identify appropriate organizations to approach such as Green Thumb and explore the possibility of partnerships. Initiate partnerships and explore establishing pilot projects by JLTLI 2000.

  2. Key Players to Involve

    National Council on the Aging, Green Thumb, Senior Core, NIB, etc.

  3. Funding

    Funding for possible meetings with representatives of national employment organizations.

  4. Impact

    More older people who experience age-related vision loss remain employed or are able to re-enter the work force because more employment opportunities are available.

    Cost savings to agencies for people who are blind or visually impaired to take advantage of existing programs.

Goal #6: Data Collection

Facilitators: Barry Stephens and Edna Johnson

Participants in this breakout session felt the best strategy to achieve Goal 6 would be to form a working group to develop a proposed Nationally Standardized Minimum Data Set (NSMDS) for use by public and private rehabilitation programs serving seniors with visual impairments.

A draft proposal of the NSMDS will be presented at the JLTLI Conference in March 2000. Initially, the general categories of data to be considered are demographic, client satisfaction, and outcome.

The workgroup, which will be led by the MSU Rehabilitation Research and Training Center on Blindness, will initially review existing data collection instruments currently in use by private and public rehabilitation programs to determine common elements and uniformity among the reporting of these elements.

Additional elements that need to be collected will be considered. The draft proposal of the NSMDS will contain the workgroup's consensus regarding the types of common data that should be collected among public and private programs. Key stakeholders will be urged to participate in the workgroup.

  1. Milestones for JLTLI 2000

    1. Achieve consensus regarding the establishment of a Nationally Standardized Minimum Data Set (NSMDS) (including demographic, outcome, and satisfaction information) for programs providing rehabilitation interventions for older adults with visual impairments.

  2. Activities

    1. Contact existing public and private rehabilitation programs to solicit initial input regarding what types of data should be included in a NSMDS (perhaps use the RSA 70-B form as a start).

    2. Form a workgroup to develop a proposed version of a NSMDS.

    3. Present a draft of the proposed NSMDS at the JLTLI 2000 conference and convene a discussion group to gain consensus on the final version.

  3. Key Players to Involve

    RSA-Edna Johnson
    Chapter 2 project directors
    NCPAB or Cooperative members
    AER-Officers of Div. IX, XI, XV, and XVII
    NCSAB independent living committee
    ACB Alliance on Aging and Vision Affiliate
    NFB
    VA Medical Center Directors of Research
    RRTC
    AFB National Aging team and Governmental Relations Group

  4. Funding

    Minimum levels will be necessary for the following items:

    Mail out to gather initial input (RRTC and Div. 15)
    Workgroup teleconferences (AFB, RRTC, VA, AER Div. 15)
    Printing drafts (RRTC)

    Presentation and discussion at JLTLI 2000 (RRTC and Div. 15)

  5. Impact

    1. Ability to collect and analyze national data from public and private programs.

    2. Ability to create a national database capable of promoting public awareness, promoting public funding, promoting program accountability, facilitating program planning and management, facilitating research related to such things as program efficiency program efficacy, etc.

  6. Long-term Milestone

    Development and dissemination of a final NSMDS.

Goal #7: Position the Vision Rehabilitation Field to Obtain Health Insurance Reimbursement

Facilitators Lorraine Lidoff and LaDonna Ringering

Discussants for Goal 7 reviewed the current barriers to funding of vision rehabilitation services under the health care reimbursement system. Public education, personnel credentials, the development of an infrastructure compatible with the current medical system, and consensus within the vision field must all be addressed as part of reaching this goal.

  1. Milestones for JLTLI 2000

    1. Create fact sheet regarding what is currently going on (ask AFB for support).

    2. Clarify roles of different actors working in this area and share the information (e.g., Cooperative, AER, AFB).

    3. Look to personnel preparation programs to:
      (1) Solve the shortage and
      (2) Prepare students to work in health care system.

    4. Educate the public and legislators that vision rehabilitation services are not a benefit covered by Medicare or other health insurance.

    5. Find examples of actual cases of individuals receiving PT and OT who are receiving unreimbursed vision rehabilitation services.

  2. Activities

    Determine how to clarify for Congress that increasing Chapter 2 funding does not solve the problem nor obviate the need for health care reimbursement. The Goal 7 group felt strongly about the need to ensure that lobbying efforts by AFB, the Cooperative, and the Network complement and support each other.

  3. Key Individuals/Organizations

    AFB to develop fact sheet.

  4. Funding

    Not completed by group.

  5. Impact

    Not completed by group.

  6. Long-term milestones

    Not completed by group.

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