ERIC ED453629: Parents Speak Out.

7 Pages·1991·0.18 MB·English

by  ERIC

DOCUMENT RESUME
EC 308 553
ED 453 629
Westphal, Sheila
AUTHOR
Parents Speak Out.
TITLE
National Early Childhood Technical Assistance System, Chapel
INSTITUTION
Hill, NC.
Special Education Programs (ED/OSERS), Washington, DC.
SPONS AGENCY
1991-00-00
PUB DATE
6p.; Published with "Coalition Quarterly." Theme issue.
NOTE
CONTRACT
300-87-0163
National Early Childhood Technical Assistance System
AVAILABLE FROM
(NECTAS), 137 E. Franklin St., Suite 500, Chapel Hill, NC
27514-3628. Tel: [phone]; Tel: [phone] (TDD); Fax:
919-966-7463; e-mail: [email protected]; Web site:
http://www.nectas.unc.edu.
Serials (022)
Collected Works
PUB TYPE
Early Childhood Bulletin; Win-Spr 1991
JOURNAL CIT
EDRS PRICE MF01/PC01 Plus Postage.
*Agency Cooperation; Agency Role; Communications;
DESCRIPTORS
*Coordination; *Disabilities; Early Childhood Education;
Early Intervention; Educational Legislation; Evaluation
Methods; *Family Programs; Federal Legislation; Financial
Support; Parent Empowerment; *Parent Participation;
Preschool Education; Public Policy
*Individuals with Disabilities Education Act Part H;
IDENTIFIERS
*Interagency Coordinating Council
ABSTRACT
This issue of the "Early Childhood Bulletin" highlights some
of the major concerns raised by parents during the second national meeting of
parent members of state Interagency Coordinating Councils (ICCs) for early
intervention, which was held in conjunction with the Partnerships for
Progress Conference IV in Crystal City, Arlington, VA, in July 1990. The most
pressing concerns parents raised were in the areas of family support, funding
for PL 99-457, networking, legislative issues, and parent/professional
collaboration. Each of these concerns is described and the recommendations
that were generated during the conference are then presented. Parents'
reaffirmation of family-centered community-based programs was a central,
recurrent theme throughout the conference. Parents presented their vision of
being equal partners with the other planners of PL 99-457 and of receiving
support for themselves and their families where they live, where they work,
and where they play.
(SG)
Reproductions supplied by EDRS are the best that can be made
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COALITION QUARTERLY
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EARLY CHILDHOOD BULLETIN
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WINTER/SPRING
1991
PARENTS SPEAK OUT
By
SHEILA WESTPHAL
U.S. DEPARTMENT OF EDUCATION
Office of Educational Research and Improvement
EDUCATIONAL RESOURCES INFORMATION
CENTER (ERIC)
This document has been reproduced as
received from the person or organization
originating it.
O Minor changes have been made to
improve reproduction quality.
o Points of view or opinions stated in this
document do not necessarily represent
official OERI position or policy.
BEST COPY AVAIIABLE
MO
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BEST COPY AVAILABLE
oalitionA
uarter0 r
CHILDHOOD
EARLY
BULLETIN
News by and for Parent Members of State Interagency Coordinating Councils
Winter/Spring
Prepared by NEC*TAS Parent Network Staff
1991
1
Parents Speak Out
by Sheila Westphal
Early Childhood Resource Specialist
The second national meeting of parent members of
PL 99-457. The most pressing concerns parents raised
state Interagency Coordinating Councils (ICC) for early
were in the areas of family support, funding for PL 99-
intervention was held in conjunction with the Partner-
457, networking, legislative Issues, and parent/profes-
ships for Progress Conference IV in Crystal City, Arling-
sional collaboration.
ton, Virginia, in July 1990. At the conclusion of the con-
This Bulletin highlights these major concerns, and
ference, one parent summed up how crucial it is for
gives the recommendations generated both at the
parents serving on their state I CC to meet with their
parents'
meeting and throughout the conference.
counterparts from across the nation: "Getting together
reaffirmation
Parents'
of
family-centered
with other parents has been great to strengthen the
community-based programs was a central, recurrent
the
vision and
support network." It was exciting and en-
theme throughout the conference. Parents are doing
lightening to hear from so many parents
over 100
what they are doing on ICCs because they have a vision
parents from 49 states and territories were present
that parents will be equal in partnership with the other
Throughout the conference many concerns and rec-
planners of P.L. 99-457 and that communities will
ommendations were shared by both parents and profes-
support them and their families where they live, where
sionals as we worked together to continue planning for
they work, and where they play.
full implementation of the early childhood provisions of
Concerns & Recommendations
Family Support Issues
Familycentered services
services into the schools. Families may have a height-
ened expectation for teamwork and partnership, for
Concern; Parents strongly endorse the concept of
Parents should be supported in their
example.
family-centered services and see themselves as play-
efforts to carry these expectations and skills to the
ing an important role in supporting this new direc-
next school environment.
tion in their state early intervention programs and
There is a need to compile an annotated bibliog-
services. There is considerable concern, however,
raphyof clearly written materials that describe family-
about the newness of the direction in the overall
centered principles and practices and to make them
scheme of services. Families are saying, "We know
available to ICC parent members and to other
par-
we are having an impact on birth-to-three services,
ents.
but what will happen when our children turn three
Family assessment
and enter the school system?" Families are anxious to
Concern: Parents are concerned about the language
have more definition and clarification of what "fam-
requiring "assessment of families" because of the
ily-centered" means. They want to be able to carry
possible implication that their families will be judged
the message to new service environments they and
from a "pathology" or "deviance" perspective, either
their children will encounter and to maintain their
psychologically or sociologically.
In some states
sense of competence and power.
parents are hearing of plans for pre- and post-test
Recommendations: One of the best ways to master
comparisons of family cohesion.
a subject is to let others know about it, to teach it.
Those of us involved primarily in education need to
Recommendation Follow California's proposal to
find ways to extend the message of family-centered
do away with assessment of family strengths and
JEST
(;OPY
AMILAPI
IFSP
needs. Instead, identify family concerns and priori-
Concerns: How do we protect and nurture the spirit
ties for their children, then assess the availability and
of the law so that we are not just signing
our names
adequacy of resources as they relate to addressing
on lines and in boxes? How do we make the IFSP an
those concerns and priorities.
invention that allows for family dreams to be
ex-
pressed and furthered? Parents are concerned about
Case management
the efforts spent to make IFSPs imitate current IEP
Concerns: Families are wary of the perception that
protocol. The challenge is to build in accountability
they or their children are "cases" in need of manage-
and procedural safeguards sufficient to protect the
ment. Families are not cases, and do not want to be
rights of children and families, yet avoid an overly le-
galized, adversarial system.
managed. A related concern is that case management
may add yet another layer of bureaucracy between
Recommendations: Encourage parents to consider
families and the services they need.
that the IFSP belongs to them and their family. It may
be useful to look at it as a management tool for clari-
Recommendation: Continue to clarify the meaning
fying roles and relationships of team members, chart-
and intent of family-centered case management as a
ing progress and identifying problems.
resource to parents, a support for them in coordinat-
ing and managing a fragmented system. To help
Rights under PL 99-457 must be spelled out, pos-
sibly in the IFSP. A system independent of the lead
clarify the intent, many organizations, including the
agency is needed to teach parents about their rights,
parents, recommend that the term be changed, pos-
the laws and what constitutes a good IFSP.
sibly to "care coordination."
Parent Networking/Involvement Issues
Interagency Coordinating Councils
ecommenclation: Identify the source of the prob-
lem. Is there a lack of commitment at the state level?
Concern; There are no established communication
Are recruitment activities sufficient? Are adequate
links and channels to insure a flow of information
supports in place for parents who may want to par-
from the parents, to the state ICC, to the FICC, back
ticipate? Enlist the support of the state Parent Train-
to state ICCs, and to local or regional ICCs.
ing and Information (PTI) Center if needed.
Recommendation; Establish formal channels for
Concern; Parents are not given sufficient prepara-
communication and foster informal ones.
tion to allow them to participate optimally on the
Parents reported the following grassroots efforts:
ICC.
In California, the ICC initiated a statewide newslet-
Recommendation: Information is essential to equip-
ter as a way to include and inform families across the
ping parents to serve effectively. An ICC orientation
state.
for all parents by parents was recommended, as was
Washington state includes parent support net-
fostering mentoring relationships among experi-
works in their mailing list.
enced and new parents.
An orientation manual
Florida has initiated the Parent Resource Organi-
should be developed and made available to ICCs.
zation (PRO) so parents from all over the state can get
[Note: A future issue of "Early Chilhood Bulletin"
together and discuss what is happening on the ICC.
will address this need.]
Pennsylvania is sponsoring a "Leadership 2000"
initiative to generate more public awareness about
Concern; Some parents are concerned that, by the
disability issues and foster more parent involve-
time they do become familiar with how the ICC
ment.
works, it is time to retire because their child has ex-
Massachusetts is funding the establishment of re-
ceeded the age limit. This requirement also deprives
gional early intervention parent advisory councils.
the ICC of experienced parents.
Each of the five ICC parents is responsible for parent
Recommendation: ICCs should have a percentage
networking in a region of the state. ( The state lead
of parents with children under five years old and a
agency is very supportive of parent participation,
percentage with children over five.
and has proposed an increase in ICC parent repre-
Concern: There are insufficient financial and family
sentatives from five to eight.)
supports for parents who serve on state ICCs. Par-
The NEC*TAS list of ICC parents is a useful re-
ents find that the time commitment often requires
source for helping parents network nationally.
them to take time off from work, thus losing a day's
Concern:_ A few states do not have the three parents
pay. Some must pay for child care out of pocket, or
on the state ICC required by law.
are forced to use scarce respite care services while
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MOO ISM
they attend ICC meetings. While professionals at-
Concern; There is inadequate representation of the
tend ICC meetings as part of their jobs,' rcimburse-
diversity of families in states.
&tent for expenses and compensation for time poli-
Recommendations: Put in place the supports that
cies are not in place for parents. Less than 20% of the
will allow for true representation of all the kinds of
ICCs are set up so that parents will be fully reim-
families who use early intervention services.
bursed for their expenses.
Adopt an "Essential Policy" that states that all
policies and procedures must have considered and
Recommendations: ICCs should make a financial
been adapted to address the unique characteristics of
commitment to at least cover parents' expenses in-
diverse families. Establish the procedure of review-
curred as a result of participation on the ICC. Child
ing all new policies against the "Essential Policy." At
care expenses should be reimbursed for the actual
every meeting, display the Essential Policy on the
costs of services, not at a set rate. Without these
wall and assign someone to be a monitor. Design
or
supports in place, only a select group of parents will
adopt new policies that will address the unique
be able to be involved to any significant degree. (See
needs of diverse families. Be able to say, "These
"Early Childhood Bulletin," Spring/Summer 1990,
policies and procedures are sensitive to the unique
for more discussion of this topic.)
needs of these families."
Funding Issues
Concern; There is great concern about the impact of
strong commitment to Part H by nearly doubling the
the federal deficit and national economy on funding
appropriations for FY 1991. Because of the economic
for PL 99-457. Many states are facing severe deficits.
it is crucial that this federal support con-
climate,
Funding for early intervention must compete with
tinue as states move toward full implementation.
basic health and human service needs.
Supporting coordination across systemsstate and
Some states are concerned about census-based
federalis also seen as crucial to maximizing and
funding. Alaska, for example, is concerned about
generating funding.
how to reach a small population in a very large state.
Investigate the feasibility of allocating funds ac-
Recommendations;
Congress has demonstrated
cording to child count rather than census.
Legislation Issues
Timelines
state officials is needed soon to enact and fund state-
wide programs."
Concerns:
Federal timelines are fast approaching
Recommendations: NEC*TAS and the PTIs (Parent
for states to ensure that all eligible children and their
Training and Information Centers) must be given the
families are receiving all the services identified in
support they need to train ICC parents and those in
their IFSPs. There is concern that states which have
early intervention in the skills they need to build a
but which are facing
proceeded in good faith
base of support.
budget deficits may not be able to enact enabling
Participants offered a number of concrete sugges-
legislation within the timelines. Many parents feel
tions for increasing public awareness, including:
that their states are just getting started on enabling
legislation and are looking for the timelines to be
- Work at the town meeting, budget commit-
extended.
tee level in your community.
Other states are asking that
-Establish a telephone tree to get information
timelines not be
out quickly.
moved back because they are useful for creating the
-Send information to legislators regularly and
urgency needed to get legislative action.
invite them to local and state ICC meetings.
Recommendationl:
Timelines should be moved
-Take your senator/representative to visit a
back for states which truly need more time. Provide
program. Get press coverage of the visit.
incentives for states ready to implement.
-Host a legislative breakfast or luncheon. (Get
Public Awareness
food donated or have it be potluck, with
Parents noted that a recent Mental
Concerns:
parents and students serving.)
-Invite your senator and/or representative to
Health Law Project survey of eleven states on the
lunch or coffee maintain personal contact.
progress in state early intervention program plan-
-Sometimes less "polished" speakers have a
ning under Part H found "... the lack of public aware-
greater impact on legislators. Use them.
ness and organized advocacy on behalf of early inter-
- Be creative! For example, North Carolina
vention as extremely alarming, since the support of top
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BEST COPY AVAILABLE
When in DC (especially with your child who
local
parents got Snickers bars donated by a
has a disability), make an appointment to
saying, "Los-
company. They added wrappers
meet with your representative/senator, and
One
ing federal dollars is nothing to snicker at."
have a picture taken with him or her and your
desk be-
was placed on each representative's
child. Use the picture later as a reminder.
fore a vote on the issue.
Parent/Professional Collaboration
and deficit-oriented approach to families is
still
Interagency agreements/coordination
prevalent. Many textbooks currently in use do not
Concerns: In some states there is insufficient parent
even contain the word "family." Parents are con-
issues
cerned with the lack of attention given to
participation in "interagency workings." Turf
trying to hold to tra-
may be a barrier, with agencies
family-centered principles at the pre-service stage
ditional role definitions. In this struggle, parents see
of teacher training and in inservice opportunities.
themselves as impartial, keeping the interest of the
Innovative ways to prepare
Recommendations:
child central.
teachers, including firsthand experiences with fami-
Recommendations: Several states have addressed
lies and using parents as teachers in university and
this concern: Virginia has an interagency agreement
college curricula should be encouraged. Competen-
signed and would be willing to share it with others.
cies for teachers must be redefined according to
New York's lead agency has produced a curriculum
family-centered principles.
parent/professional
on partnering used for training
Making
teams across the state. The Partners in Policy
Concern: There is a shortage of trained early child-
Workshop sponsored by the Minnesota Develop-
hood educators and specialists.
mental Disabilities Councils is a good example of
Recommendation: A national student loan pro-
collaborative training.
childhood profes-
gram for the education of early
Personnel preparation
sionals with a "forgiveness feature" for years in the
field (similar to the national defense loans of the
Concern; Family-centered service design is a new
1960's for teachers) is needed.
approach. In practice, the traditional medical-model
parent component of NEC*TAS at the Fed-
Evelyn Hausslein, Subcontract Coordinator of the
reports that many of the concerns raised by
eration for Children with Special Needs in Boston,
Reauthorization of Part Hof PL 99-457. Testimony
ICC parents in July may be addressed in the
Subcommittees in March, April and May 1991. Legislative
will be received by Senate and House
conferences about Reauthorization. At the
aides for Senate and House leaders spoke at major
1990 for Part H Coordinators and ICC
OSEP and NEMAS-sponsored meeting in December
1991 for Parent Training and Information
chairs, and at the TAPP annual conference in January
identified were: case management (care
(PTI) projects across the country, areas of concern
children that allow parents to be eligible for ICC
coordination), parent reimbursement, ages of
Testimony on Reauthorization prepared by
service, and federal timelines for implementation.
will be included in the next issue of Coalition
the National Parent Network on Disability
Quarterly.
prepared by Sheila Westphal, Early
This Bulletin, published with each issue of Coalition Quarterly, was
AS Parent Network Staff. Sheila is the mother
Childhood Resource Specialist at Washington P AVE, and NEC1T
six. Travis has Down syndrome.
of two youngsters, Adrianna, age two and a half, and Travis, age
information from parents across the nation.
Sheila welcomes your comments and views and is eager to include
6316 South Street,Tacoma, WA 98465.
Please send your contributions to Sheila Westphal ,Washington PAVE,
include your phone number.
Also, feel free to call her at [phone]. If you write, please
fa
the National Early Childhood Technical Assistance
This Bulletin is prepared by the staff of the National Parent Network on Disabilities who participate in
Programs (OSEP), Early Education Program
System (NECTAS), which is funded through the U.S. Department of Education's Office for Special Education
University of North Carolina
for Children with Disbilities, under contract no. 300-87-0163 awarded to the Frank Porter Graham Child DevelopmentCenter,
judgment in professional and technical
at Chapel Hill. Grantees undertaking such projects undergovernmentsponsorship are encouraged to express their
matters. Points of view or opinions, therefore, do not necessarily represent the Education Department's position or policy.
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