Highlights of Annual
National Community Education Directors
- Changed operating procedures and are trying to network more with
- Primary concern is how to encourage money to go in the direction of
Community Education since TIP projects are not mandated under the DD
Reauthorization. They want to hear how UAPs will ensure the continuation
of community education and suggested gathering data on where TIP money
goes nationally and what programs this money is allocated to after the
Reauthorization is implemented.
National Training Directors
- They would like to see a further expansion of core course
information on the website and are working on gathering additional
information in this area.
- The LEND directory update needs to be done, the current information
is nearly three-years old.
- They would like to see the data gathered sent back to the programs
once processed and are concerned about the long-term problem of data
collection. They intend to research data collection programs this year and
work with the central office to seek money for the redesign of the data
- Suggested that a core component of the interdisciplinary training
curriculum be legislative affairs.
- Reported there will be no training symposium at the next annual
meeting because it is being held in conjunction with the IASSID
- This group will be looking at the need for core competencies and
developing mentorship guidelines this year as part of the development of
an interdisciplinary training guide.
- A brief history was given, including an overview of the results of
the FY99 project.
- This year's study will involve 12-20 UAP/LEND programs, who will
assess up to a total 400 children in three categories: 1) low birth weight
babies who must have disability review around age 2 to continue continued
eligibility; 2) Pre-school children, ages 3-5 who have behavioral,
emotional or cognitive disorders; 3) Adolescents, ages 14-17 who have
behavioral, emotional or cognitive disorders.
- Project timeline: Dec. - select UAP/Lend sites; Jan.10-12 - convene
advisory group to develop protocols; Feb. - begin assessments; June -
complete assessments and submit reports; Fall - participate in case
analysis review with SSA.
- Last year's project was beneficial to SSA, the participating
UAP/LEND sites, and the families involved.
- One of the ultimate objectives is to determine if particular
tests/exams make a difference in determining eligibility and in what
Federal Perspective, Duane
Alexander, Director, National Institute of Child Health and Human Development:
- The NIH budget was increased 14.7% this year and there is a verbal
commitment to double their budget over the next 5 years.
- NICHD funded researchers discovered the gene for Rett Syndrome and
there are indications that it may be possible to manipulate it
- UAPs and other programs were encouraged to apply for NICHD grants.
There is a funding information page on their website (http://www.nichd.nih.gov/).
- Incoming and outgoing board members and officers were acknowledged.
- The board of directors was pleased to report that the financial
problems of the organization are being resolved and safeguards have been
put in place to ensure that a similar event does not occur again.
- The board is optimistic about the future and looking forward to
returning to moving the organization forward.
Health Care Committee:
- The committee would like to see an expansion of the health care
resources available on the web site.
- They would like to focus on getting legislation through that
affects quality of care issues.
- They will be culling materials from professional associations to
see what stances have been taken on managed care and developmental
Outcome Measure Workgroup:
- The workgroup recommended that 1997 and 98 data be submitted to ADD
as soon as possible.
- They also suggested submitting a letter to ADD outlining the
implications of using the Logic Model, along with the report.
- They also recommended a small group make recommendations regarding
possible revisions of the data system. They requested a liaison from the
Data Committee to work with this group.
Technical Assistance Task
- The task force reviewed the status of the four major contracts.
George Jesien reported that they are working on getting current on all
- George Jesien delivered a report on the MCH LEND directors'
meeting, which was distributed to all LEND directors.
- Donna Meltzer reviewed the Developmental Disabilities Act
legislation, highlighting the changes the Senate bill makes for the UAPs.
- Donna reviewed the strategy for moving the bill from the Senate to
the House and the Committee shared some ideas for the strategy and
suggestions for recess activities.
- The Committee briefly discussed process for input for the 2000
legislative agenda and Donna said she would work with the Committee and
full membership to solidify the agenda before January 1, 2000.
- Diane Bryen, co-chair of the Assistive Technology Task Force,
reported on tech- related activities.
- The National Training Directors, Interdisciplinary, National
Community Education Directors, Multicultural, and Consumer Affairs
Councils jointly sponsored a Training Symposium entitled, "Methods
for Working with Your Legislators to Improve the Lives of People with
- The speakers for the Symposium included Bobby Silverstein of the
Center for the Study and Advancement of Disability Policy and former Staff
Director/Counsel for the Senate Subcommittee on Disability Policy; Donna
Meltzer of the AAUAP; Tom Hlavacek, Kennedy Fellow for Senator Tom Harkin;
Jackie Golden, a parent and professional with the National Parent Network
on disability; Bob Bacon, Director of the Iowa UAP and former Kennedy
- The speakers offered tips and strategies for building relationships
with key legislators and staff and how to craft messages that will sell
the program and work of the UAPs at federal, state, and local levels.
- Donna and Tom talked specifically about the DD Act and the
significant changes the reauthorization bill makes for UAPs.
- Jackie spoke about the waiting list issue and used it as an example
for affecting change in disability policy at the State level. She spoke as
a parent who worked the system to find a community housing solution for
her own son.
Council on Consumer Affairs
- Council has participated in many legislative issues including
providing support for the DD Act Reauthorization.
- Council established two awards given at the annual meeting. These
awards will be given annually to 1) the UAP who has given the greatest
support to its local council and to the representative on the AAUPA
Council on Consumer Affairs and 2) to the UAP who has been a leader
through assistive technology and accessible publications, activities and
project in supporting persons with disabilities.
- Council established work groups within the council group and is
increasing council presence at other related conference such as the ARC
- Council has established a mentoring program.