ERIC ED411661: Family-Centered Service Delivery.

14 Pages·1997·0.45 MB·English

by  ERIC

DOCUMENT RESUME
EC 305 854
ED 411 661
Higgins, Cindy, Ed.
AUTHOR
Family-Centered Service Delivery.
TITLE
Kansas Univ., Lawrence. Beach Center on Families and
INSTITUTION
Disability.
National Inst. on Disability and Rehabilitation Research
SPONS AGENCY
(ED/OSERS), Washington, DC.
ISSN-1044-8217
ISSN
1997-00-00
PUB DATE
NOTE
13p.
H133B3007-95
CONTRACT
Beach Center on Families and Disability, 3111 Haworth,
AVAILABLE FROM
University of Kansas, Lawrence, KS 66045; telephone:
785-864-7600; World Wide Web:
http://www.lsi.ukans.edu/beach/beachhp.htm
Serials (022)
PUB TYPE Collected Works
Families and Disability Newsletter; v8 n2 Sum 1997
JOURNAL CIT
MF01/PC01 Plus Postage.
EDRS PRICE
American Indians; Cultural Awareness; Delivery Systems;
DESCRIPTORS
*Disabilities; *Early Intervention; Family Attitudes; Family
Involvement; *Family Needs; *Family Programs; *Integrated
Services; Preschool Education; *Staff Role; Young Children
Kansas; North Carolina; Project Head Start
IDENTIFIERS
ABSTRACT
This theme issue focuses on family-centered practices and
policies for service delivery. The first article, "Family-Centered Service
Delivery," reports on a study of 130 published sources in education, social
work, nursing, psychology, occupational therapy, and related disciplines,
which found that the key components of family-centered philosophy and
(1) focusing upon the family as the unit of attention;
practice were:
(2)
(3) organizing assistance in
organizing assistance collaboratively;
(4) considering family
accordance with each individual family's wishes;
(5) addressing family needs holistically;
(6) individualizing
strengths;
(7) giving families complete information in a supportive
family services;
(8) normalizing perspectives; and (9) structuring service delivery to
manner;
ensure accessibility, minimal disruption of family integrity, and routine.
Another article, "Measuring Family-Centered Practices," details the findings
of a survey of 443 parents of children with disabilities that found the three
most desired early intervention staff behaviors were listening to families,
treating families with respect, and accepting families as important team
members. A third article "Family-Centered Statutory Policy," discusses
findings from a study that evaluated family-centered statues in North
Carolina and identified 24 quality indicators of exemplary family-centered
legislation. The newsletter also describes a Head Start program for Native
American children and strategies that staff can use to use it with families.
(CR)
********************************************************************************
Reproductions supplied by EDRS are the best that can be made
from the original document.
********************************************************************************
PERMISSION TO REPRODUCE
AND
THE UNIVERSITY OF KANSAS
I
DISSEMINATE THIS MATERIAL
HAS BEEN GRANTED
Beach Center on
BY
Families and Disability
TO THE EDUCATIONAL
)
RESOURCES
INFORMATION CENTER
(ERIC)
==
rtes
Fa
ByC
Family-centered service
Focusing upon the family as
In the former medical way of
delivery, across dis-
delivering health care services,
the unit of attention
ciplines and settings,
professionals looked only at the
Organizing assistance collab-
recognizes the centrality
child, not the family. Then they
oratively (e.g., ensuring mutual
of the family in the lives of
told the family what to do. End of
respect and teamwork between
individuals. It is guided by
story. Today, demand for family-
team workers and clients)
fully informed choices
centered practices has evolved
Organizing assistance in accor-
made by the family and
from the old service delivery style.
dance with each individual
focuses upon the
Family-centeredness, known
family's wishes so that the
strengths and capa-
also by names such as family-fo-
family ultimately directs deci-
bilities of these families.
cused, family-oriented, family ref-
sion making
erenced, and family empowerment,
Considering family strengths
reflects the words of poet Maya
Family-centered care providers
(versus dwelling on family de-
Angelou: "At our best level of ex-
acknowledge that each family
ficiencies)
istence, we are parts of a family,
member influences the family as a
Addressing family needs holis-
and at our highest level of
whole. To separate one from an-
tically (rather than focusing on
achievement, we work to keep the
other is like trying to put together
a member with a "problem")
family alive."
Individualizing family services
a puzzle without all the pieces.
Family-centered practices and
The child's behavior, characteris-
Giving families complete infor-
policies are not restricted to the
mation in a supportive manner
tics, and resources influence other
health care or disability fields.
Normalizing perspectives (i.e.,
family members and vice versa.
Social work, education, psychol-
recognizing that much of what As social work educator M. L.
ogy, sociology, and occupational
those receiving services are
Allen said, "For most children in
therapy also are embracing this
experiencing is typical)
this country, the best investment
form of service provision.
Structuring service delivery to
in their future is an investment in
By trying to give families what
ensure accessibility, minimal
a strong family."
they want, professionals facilitate
disruption of family integrity
families' own power.
and routine
If It Works...3
Key components. After re-
Scale Research Brief...4
A new definition. Upon
Program Indicators...5
viewing 130 published sources in
completion of the literature re-
Tuning in to Families...6
education, social work, nursing,
view and consultation with fam-
Policy Brief...7
psychology, occupational therapy,
ilies and service agencies across
Statute Indicators...9
and related disciplines, Beach
Beach Products...10
the United States, Beach Center
Center researchers found these key
Beach Center Update..11
researchers came up with the
components of family-centered
Check It Out...12
following definition:
philosophy and practice:
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ofti.1 OEM pe p PA."
Fam500es and DOsabigOtv HeuggetteT - 2
Family-centered service pro- nurses-- also have done much to
Over the last 20 years, family-
viders try to address all challenges increase family-centered services
centered services have developed
that may influence children who
in the last 25 years. Other health
significantly in special education,
need care. Often that means that
early childhood education, and the
the service provider works with
developmental disabilities fields--.
other agencies to provide "wrap-
largely because of federal legis-
"We
w0[10 be [Dann'
around" care, an all-in-one pack-
lation encouraging parental in-
emapped to
age of assistance.
volvement in service delivery.
answerr a qamny's
Strengths. Family-centered
enefits of family-center-
needs
professionals look hard for the
edness. Family-centered prac-
strengths--the talents, resources,
nstenv vea00v
tices can improve:
attributes, and aspirations--of each
00sten to w[Tat
Child functioning
family member. Who knows better
Mau a[fQa sayOng."
Parent skills and
about a person than his or her fam-
emotional well-being
Albert Gore, Vice-
ily? Family centeredness values
Parents' view of service
President of the
parental knowledge and experi-
effectiveness and sense of
ence. The service provider be-
United States
comes a consultant who provides
control over their child's care
families with information that
Problem solving
strengthens them to make their
Ability of families to care
own decisions. Family-centered
professionals have followed their
for their child at home
service delivery makes the most of
lead.
Service delivery
family involvement in decision
The consumer movement out of
Cost-effectiveness
making. Information is actively
the 1960s, legislation, increased
Family empowerment
shared. Everyone who is signifi-
demand for complex chronic ill-
cantly involved with the child col-
ness services, and rising health
While there are many bene-
laborates in final decisions. Ulti-
care costs have pushed the rest of
fits, however, family-centered
mately, the family should make
medicine toward family-centered
the final decisions.
delivery practices.
service delivery can be chal-
lenging to practice. Educators have
Family centeredness also has
History. Interestingly, the term
long been linked with social work.
suggested that obstacles to family
family-centered was coined in the
centeredness include profession-
As one social worker wrote in
1950s by the Family-Centered
als' lack of training in counseling
1917, "As society is now or-
Project of St. Paul, Minnesota,
ganized, we can neither doctor and family systems, role clarity,
which formed much current
flexible funding, and inclusive
people nor educate them, launch
thought about working with
services not provided by the
them into industry nor rescue them
families facing multiple chal-
from long dependence, and do
school or community. Yet, service
lenges. Those in the medical
providers must meet these chal-
these things in a truly social way
field--family practitioners, ob-
lenges if they are to fulfill their
without taking their families into
stetricians, pediatricians, and
account."
professions' stated values.
Families and Disability (ISSN: 1044-8217) is published
Department of Education, Office of Special Education
three times a year by the Beach Center on Families and
and Rehabilitative Services, Grant #H133B3007-95.
Disability at The University of Kansas. There is no
Opinions expressed in Families and Disability do not
subscription charge. Funding for Families and
necessarily represent the view of NIDRR or The
Disability is provided by the National Institute on
University of Kansas. Copyright 1997.
Disability and Rehabilitation Research, U. S.
Editor: Cindy Higgins
swelettev a S
Families and DisabOrli
S
El
E/
beautiful quilt on the wall, which I
This particular place I went was a
asked about. They told me the star
Head Start program. Head Start is
points represented tribes within
a program that has a strong history
their tribe and other meaningful
of family involvement. They just
were interested in getting feedback elements. They knew I was inter-
ested in learning about them.
about how well they were doing.
"Because families live on a "The Ogala Sioux feel people
have to learn their customs to stay
reservation, travel is a real prob-
there and work. If not, people
lem. It is a gigantic reservation.
People often have to drive over an come in with the idea of change,
hour to get to the program facili-
instead of accepting the way things
ties from the nearest city or out-
are on the reservation.
"They have people come in
post. You drive, then--all of a
Beverlyn Brown, Beach Center researcher,
has given several workshops on the
sudden--here are three buildings: a
who can't speak their language,
Family-Centered Behavior Scale. Here,
mental health center, dialysis
can't communicate, don't want to
Bever 1yn discusses her workshop
learn, and then end up leaving.
building, and Head Start.
experiences and family -centered services.
Families have to start from ground
"Because of distance then, they
"When I went to do training on
have to deliver services in a spe-
one again. This ruins service conti-
family centeredness, I didn't go to
cific place and have restraints on
nuity.
evaluate programs. I told them
"I didn't go in there telling
hours for people to come. They
what family-centeredness is and
can't go to families. But they do
them what to do or what they
how they could look at their own
provide transportation to their
needed to be doing. I also tried to
organizations. They then could
building. Even though these fac-
be aware of the difference between
self-identify how family-centered
tors make the program center-
my culture and theirs to see how
they were by using the Family-
based, parents, when asked, said
my training materials and presen-
Centered Behavior Scale and
they viewed the services as family
tation would fit. Sometimes you
knowledge they gained from the
centered.
have to change the materials to
training.
"Cultural competency is impor-
help families get services deliv-
"Some organizations are doing
tant in family-centered service
ered to them in the way they want.
FC-things, some not. Most pro-
provision. At the reservation, the
"On the reservation, I did two
grams look at certain parts of their
majority of social workers are Na-
trainings on family-centered ser-
organization and practices, rather
tive Americans who went away to
vice delivery. One in the morning,
than the whole.
school and came back. They un-
the other in the afternoon for a to-
"One family support program I
derstand their people.
tal of 30 staff members.
went to was family-centered in
"Those who were not Native
"In these trainings, I presented
many respects, but the service pro-
American had to learn Sioux cus-
the key element of family-cen-
viders couldn't get their adminis-
toms to be really accepted. They
teredness and invited them to dis-
tration to listen. They wanted me
had to come to work willing to
cuss their work with families, at
there to speak to them and the
learn. There was a doctor there
both the case and organizational
administrators, so the adminis-
who now can speak the language
levels. They change things to fit
tration could hear what they had to
of the Ogala Sioux more fluent
them, which works for them.
say about meeting the needs of
than some of the younger Native
Evaluations indicated that the
children and families better.
Americans on the reservation. I
training stimulated staff members
"My favorite training was with
also really wanted to know about
to view their work in new ways.
the Oglala Sioux in South Dakota.
them. For instance, they had a
They were doing an excellent job."
4
Hies and Disability Newsletter - 4
F
d Practices
Measuring Family-Center
consistency over time. Most sur-
services in Arizona. It has also
vey respondents were women
been recommended for adoption in
Family-Centered
(87%), white (68%), and living in
a national evaluation of children's
Behavior Scale
two-parent households (72%). Par-
health systems change initiatives."
Who: 443 parents/caregivers
What: The development of a
ticipants had children with devel-
To obtain the Family-Centered
tool that programs can use to
opmental delay (34%), mental re-
Behavior Scale, contact the Beach
measure their family-
tardation (32%), emotional or be-
Center on Families and Disability,
centeredness
havioral disorder 7(29%), or learn-
3111 Haworth, University of Kan-
When: 1994-1995
ing disability (29%).
sas, Lawrence, KS 66045. Cost is
Where: The Beach Center on
The three most desired staff
$35.00 and includes a camera-
Families and Disability
behaviors (according to families)
ready copy of the Scale in English
Relevant Findings: The three
were: listening to families, treating
and Spanish, a manual, and back-
most desired staff behaviors
families with respect, and accept-
ground information on the scale
(according to families) were:
ing families as important team
and family-centeredness. All or-
listening to families, treating
members for a child.
ders must be prepaid.
families with respect, and
Families appreciated staff who
accepting families as important
did not judge families because of
team members for a child.
The
differences, did not blame parents
Family-Centered
1991
was
Program Rating Scale
de-
for their children's behavior, and
To develop a scale that service signed to evaluate early inter-
did not criticize what parents do
vention programs. Extensive
delivery providers could use to
with their children.
field testing at 56 early interven-
measure their own family-centered
Families, according to the
tion
programs
states
in
10
practices, Beach Center research-
scale, least often received help showed that parents and staff
ers first reviewed existing litera-
had similar opinions about the
from service delivery staff access-
ture, then defined family-cen-
importance of program features,
ing support from other families,
including: Flexibility and innova-
teredness based on their findings.
friends, and community.
tion, providing responsive ser-
This project grew out of an earlier
On all items, staff members
vices, individualizing services,
Beach Center scale that focused on
providing practical information,
whom participants rated "best"
early intervention programs [see
communication style, maintain-
received higher family-centered
ing comfortable relationships,
box]. Two groups, (1) parents who
scores than those rated "worst."
building collaboration, respect-
have children with special needs
Said Chris Petr, project direc-
ing family's decisions, respect-
and, (2) professionals who work
tor, "Judging from the responses,
ing
family's
expertise
and
with these families reviewed and
strengths,
recognizing
family
it appears that the Family-Cen-
accepted the definition. The pro-
need for autonomy, and building
tered Behavior Scale is meeting a
positive
expectations.
ject's advisory committee of con-
Many
real need in the field. The wide-
programs have since used this
cerned stakeholders also approved
spread adoption of the Family-
scale for self-evaluation, and
the definition.
Centered Behavior Scale also
other researchers have incorpo-
The initial 32-item survey (in
rated the scale into related stud-
means that many service agencies
both English and Spanish) devel-
ies.
are serious about improving
oped by the Beach Center was sent
See Murphy, D. , Lee, I. M.,
family-centeredness. The Family-
Turbiville, V. P., & Turnbull, A. P.
to 1,700 households. Parents and
Centered Behavior Scale is cur-
(1995). The Family-Centered
caregivers from 45 states returned
Program Rating Scale: An instru-
rently being used in statewide
ment for program evaluation and
the surveys to be analyzed. The
evaluations of children's mental
change. Journal of Early Inter-
survey was sent again to 250 par-
vention, 19(1), 24-42.
health programs in Florida and
ticipants to check the instrument's
Kansas, and children's medical
After a cross-disciplinary literature review about family-centered service delivery, Beach
Center researchers used their findings to define the concept of family-centered service
delivery:
Family-centered service delivery, across disciplines and settings, views the family
as the unit of attention, and organizes assistance in a collaborative fashion and in
accordance with each individual family's' wishes, strengths, and needs.
Key components of family - centered service delivery:
Focusing upon the family as the unit of attention
Organizing assistance collaboratively (e.g., ensuring equal, mutual respect
and teamwork between team workers and clients)
Organizing assistance in accordance with each individual family's wishes
so that the family ultimately directs decision making
Considering family strengths (versus dwelling on family deficiencies)
Addressing family needs holistically (rather than focusing on
o
the member with a "presenting problem")
Individualizing services for each family
*
Giving families complete information in a supportive manner
*
Normalizing perspectives (i.e., recognizing that much of what those
receiving services are experiencing is normal)
Structuring service delivery to ensure accessibility, minimal disruption
of family integrity and routine
For more information on family-centered service delivery, contact the Beach Center
on Families and Disability, 3111 Haworth, University of Kansas, Lawrence, KS 66045,
785-864-7600, Beach @dole.lsi.ukans.edu. Source for this information:
Allen, R. I., & Petr, C. G. (1995). Family-centered service delivery: A cross-
disciplinary literature review and conceptualization. Lawrence: University of
Kansas, Beach Center on Families and Disability.
Permission granted to photocopy and distribute this fact sheet.
Please credit the Beach Center on Families and Disability.
6
Fanaes and Disability Revegettep - 6
n[Ing kl to
Professionals who adopt a
tion's family centeredness and cul-
here?" to allow the family to start
family-centered vision often must
tural competence.
the story.
radically shift their thinking. This
Through professional work-
Listen to what families wish to
reorientation may require assess-
shops and literature, staff can be-
share. Acknowledge and validate
ing one's self and organization,
gin to think of what it means to
their experiences. The question
creating support for family partici-
create partnerships with the fami-
"What is going well for you
pation, providing staff and family
lies they serve.
now?," builds on family strengths
training, and expanding program
From the start, involve families
and helps identify resources that
and fiscal flexibility.
at all review levels and in planning
families already use.
As part of this self-assessment,
processes. Include children with
Avoid technical language (e.g.,
an organization may use a scale,
special needs and their family
"gross motor skills") and ac-
such as the Beach Center Family-
members in your team: They are
ronyms (e.g., "LRE," "IFSP") that
Centered Behavior Scale, to mea-
your experts on family centered-
create barriers. Instead, pro-
sure its level of staff member fam-
ness. Seek to enhance the family's
fessionals should be alert to using
ily centeredness. Organizations
strengths and decision-making
the family's wording. (Sometimes,
and staff members may need to
capacities.
a staff member may have to ask
revise their policies so they in-
Staff should listen, point out
families to clarify certain words.)
clude family-centered language.
what the child and family do well,
At meetings, staff should en-
For instance, staff should ask
and not blame the family for the
courage family members to offer
families how they wish to describe
child's problems. Staff should re-
opinions, understand their rights,
their own ethnicity. If a family
spect family beliefs, customs, and
and comment on the service pro-
prefers "First Nations" to "Native
ways of doing things.
gram itself. As part of service pro-
American" or "American Indian,"
Instead of saying "How may I
vision, staff should help the family
use "First Nations." The family
help you?" or "What kind of prob-
get services from other agencies or
might be called "consumer," "fam-
programs.
ily," "client," "user," or "partici-
pant," depending on family prefer-
Program flexibility. An organiza-
ences, instead of "patient" or
tion wishing to be more family
"case."
centered also may want to look
into expanding its program and
Physical space. Staff and families
fiscal flexibility.
should work together in a welcom-
This flexibility can be achieved
ing area furnished also for chil-
in several ways: By freeing exist-
dren. Provide reading materials
ing program funds, reducing com-
that interest the families served.
mitment to specific programs, tap-
Accessible service space for a
ping new funding sources, and
range of consumers, convenient
contributing program funds to an
locations, and hours of operation
interagency funding pool used for
that fit consumers' needs are also
children and families whose needs
necessary to ensure family cen-
are not met by existing community
teredness.
lems are you having with your
services.
child?"--questions that focus on
Building on family strengths
Staff training. Initial staff-train-
what is wrong and place the pro-
helps children with disabilities and
ing needs may be identified
fessional in the position of expert-
families attain their goals and be-
-
through assessing an organiza-
ask instead, "What brings you
come more competent.
Famtines and DOsabEntv Baugsgetter - 7
Famil F-Cerntered Statute
pute resolution process, and more
centered literature and developed
In the last two decades, state
consumer participation on local
22 quality indicators of family-
governments have enacted statu-
boards.
centered legislation. The quality
tory policies that have empowered
The largest section of the report
indicators included family-ori-
families who have children with
is devoted to the North Carolina
ented principles, service-oriented
disabilities. A recent example of
Mental Health, Developmental
principles, eligibility criteria, and
such policies is state family sup-
Disability, and Substance Abuse
a list of specific services families
port programs.
Act. The recommendations re-
often need.
The Beach Center created the
garding these policies were numer-
Next, the researchers analyzed
Family Policy Project to build on
ous, including:
specific laws, identified policies
these policy developments and
Commitment to residential fa-
that reflected the quality indica-
encourage states to make all of
cilities should be defined as the
tors, and made recommendations
their statutory policies that serve
most restrictive environment
for those that did not.
families and children, whether
and statutory preference should
As a final step, the North Caro-
they are generic or disability-spe-
be given to maintaining chil-
lina Council on Developmental
cific, more family-centered.
dren in their homes with provi-
Disabilities and other experts from
The Family Policy Project
sion of appropriate services and
the North Carolina human services
evaluates state policies to deter-
system reviewed project progress
supports.
mine the extent to which they in-
Child- and family-centered
and offered comments.
corporate family-centered princi-
planning should be required to
Of the statutes reviewed, North
ples. The project's first report, In-
Carolina's Early Childhood Initia- address the needs of the child
tegrating Family-Centered Poli-
tive, also known as "Smart Start,"
with a disability and family.
cies Into Generic Services: An
Incentives and training on the
was found to incorporate the great-
Evaluation of North Carolina Stat-
est number of quality indicators
use of informal supports should
utes, was recently published and is
for family-centered legislation.
be provided to families of chil-
available through the Beach Cen-
ter's publications catalog. The
The Initiative is a collaborative
dren with disabilities.
Area authorities (cities and
report evaluates North Carolina's program that involves the state,
local communities, public and pri-
counties that are responsible
laws on the following:
for coordinating public services
vate agencies, schools and families
Mental health, developmental
in specific geographic areas)
in providing early childhood and
disabilities, and substance
should be required to provide a
developmental services to pre-
abuse services
school children and their families.
basic level of home- and
Family preservation
community-based services.
Beach Center analysts found
Foster care and adoption
The North Carolina Depart-
that the Initiative's greatests
assistance
ment of Human Resources
strengths were its provisions en-
Guardianship
couraging home-based, child- and
Juvenile services
should be required
family-centered services, staff de-
Early Childhood Initiative
to provide training and technical
velopment, family-based decision
assistance to area authorities. Cur-
and recommends changes to these
making, and need-responsive ser-
vices. The researchers rec-
rent education and training pro-
policies that would make them
grams should be more widely
ommended amending the Early
more supportive of families, par-
available and used not only at the
Childhood Initiative, however, to
ticularly families who have chil-
pre-service level, but as in-service
require local programs to provide
dren with disabilities. At the be-
training.
specific services, individualized
ginning of the project, Beach Cen-
(continued on. p. 9)
ter researchers reviewed family-
planning, informal supports, a dis-
8
After a literature review on family-centered policy, Beach Center researchers identified
24
quality indicators of family-centered legislation. If legislation authorizes and mandates the
service delivery system to be family centered and need responsive, families
can become
more empowered. To increase family empowerment, state policies should include the
following:
Family-Centered Principles
Prevent out-of-home placement of persons with disabilities and provide home- and
community-based care
Merge formal and informal (e.g., friends, neighbors, extended family) family
supports
Promote family-based decision making and treat parents
as collaborators
Provide outreach to families, integrate families into communities, and reduce
the negative
impact of disability on people with disabilities, their families, and the
community
Service-Oriented Principles
Respond to family needs and individualize services
Deliver services in the least restrictive environment
Include home- and community-based services and
encourage formal and informal family
supports
Coordinate services on state and local levels
Be culturally sensitive and competent
Provide current education, training, and technical assistance
to staff, service providers,
and service agencies.
o
Be legally accountable to consumers of service
Provide services and supports to families in
a way that is cost-efficient and prevents
the commitment of peope with disabilities to
care facilities
Service Eligibility
All families with children with disabilities (at home
or in a facility) under age 18 (and
between ages 18-21 if living at home) should be eligible for
state programs
State programs should be available for all families with children who have disabilities
with
priority in eligibility for children with severe disabilities
Eligibility requirements based on socioeconomic status should
use broad criteria, because
even in average-income families the economic and psychological stresses of caring for
a
child with a disability can limit typical family goals and activities
Specific Services
States should provide alternative care arrangements (e.g., family respite, child
care, sitter
services, attendant care, homemaker services,
camps, recreation services)
States should provide services to support and educate families (e.g., family
counseling,
family support groups, parent training and support
groups, sibling training and support
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supported employment training,
groups, futures planning, transition to adulthood planning,
crisis intervention, case management and service coordination, information and referral,
advocacy)
States should provide specialized technology, equipment, or modifications (e.g.,
telecommunication devices, adaptive equipment, home and vehicle modifications,
transportation costs to service providers, utility costs to care for the child at home)
States should provide health-related services and equipment (e.g. special diets, behavior
6
management, speech therapy, nursing care, skills training, dental services, home health
service, evaluations and assessments)
States should provide financial assistance (e.g., rent assistance, health insurance premiums,
cash subsidies for items or services)
Advisory Councils
Create advisory councils of parents and professionals to advise or monitor state
o
fund expenditures for services to families and children with disabilities
People-First Language
Use "people-first" language that refers to the person before the disability (e.g., boy with
4
autism, rather than autistic boy) in all communication
This information is derived from work done by Beach Center researchers analyzing the degree to
which state legislation authorizes family-centered services to families of children with disabilities.
For more information on this research, please contact the Beach Center on Families and Disability,
3111 Haworth, The University of Kansas, Lawrence, KS 66045, 785-864-7600, Beach@dole.
Isi.ukans.edu.
Permission granted to photocopy and distribute this fact sheet.
Please credit the Beach Center on Families and Disability.
(continued from p.
7)
The Project has already had a positive influence in North Carolina. In July, Rud Turnbull,
co-director of the Beach Center, spoke to a group of North Carolina parents, agency staff,
and policy makers regarding strategies for implementing the Project's recommendations.
Marian Hartman, a planner, evaluator, and legislative liaison on developmental
disabilities, stated that Turnbull's remarks were well-received. "Rud did an excellent job of
stimulating a discussion about how to move the state to a more family-friendly system of
was excited about continuing this effort and will be
services and supports. The group
meeting again to discuss specific strategies for delivering change," she said.
The Family Policy Project is currently evaluating Kansas policies to determine the
extent to which they are family-centered. The results of this analysis should be published in
fall 1997.