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About This Issue
We, who work with children in various capacities, try to keep
informed about the many issues that are relevant to young
children and families. When I learned that progressive Minnesota
was in the company of Georgia, Alabama, and Mississippi, it was a
"red flag" moment. These and a couple other states have
not taken the steps to fully implement Part H of PL 99-457. What
is this all about?
Our thanks to the Minnesota Governor's Interagency
Coordinating Council, the Coalition for Year 5, and several
helpful individuals for their assistance in providing information
for this issue of Early Report. We offer a number of questions
and answers for your thoughtful consideration.
Erna Fishhaut, Editor
Part H: An Introduction
The families of more than 2,000 Minnesotan infants and
toddlers who have disabilities could write volumes about their
struggles in finding services that respect all members of the
family while meeting the special needs of a very young child.
Parents often had to make decisions about a service plan,
although they had unanswered questions about a specific program
for the infant. They were given little insight about what the
effects might be on the other family members. Sometimes all of
the parents' time and effort was needed to be sure that the child
with disabilities got the necessary services, which meant the
siblings got less attention and parents were exhausted as they
worked to manage the trying situations. This issue of Early
Report looks at how federal and state legislation has charted new
policies for society's youngest and most vulnerable citizens.
In 1986, when Congress amended the Individuals with
Disabilities Education Act (IDEA) creating Public Law 99-457, it
established a truly significant national policy.
This legislation recognizes the benefits of early
intervention, provides assistance to states to build systems of
service delivery, and recognizes the unique role of families in
the development of their children who have disabilities.
Part H of the amendments offered incentive grants to encourage
states to establish or expand comprehensive service systems for
infants and toddlers with handicapping conditions. States had to
plan for statewide early intervention services that were truly
multidisciplinary and interagency.
The legislation recognized that, in the case of an infant or
toddler, the primary consumer is the family or primary caregiver.
While the child's developmental delays or disabilities are
identified, intervention must focus on strengthening and enabling
the family to promote the overall development of the child. This
makes it necessary for service models to change from
child-centered assessment and intervention to family-focused
services, and from single-agency responsibility to
multiple-agency collaboration.
Part H monies had several strings attached. Each state had to
give assurances over the following time frame:
Years 1 and 2 ... The governor must designate a lead agency to
administer and supervise programs and appoint an Interagency
Coordinating Council (ICC).
Year 3 ... The state must demonstrate an adopted public policy
for a statewide system.
Year 4 ... The state must demonstrate that its system is in
place.
Year 5 and on ... The state must make the services available
to all eligible infants and toddlers.
To meet all these requirements, state agencies had to work
together in a collaborative fashion, define eligibility criteria,
and develop a child find-and-referral system, a data collection
system, and a central resource directory.
When a state accepts the opportunity to go to Year 5, it
automatically assumes responsibilities. Entering the fifth year,
the state must have its system in place, as Minnesota does now.
Federal money for the fifth year and thereafter is intended to
help operate the system which assures the family of any child 0-3
with disabilities to services. This means the state must be ready
and willing to extend appropriate services to all family members
of the children. These include family assessment, service
coordination, central directory, public awareness, and other
related services.
Questions and Answers
About
Special Education and Early Intervention
What Is The Difference Between Special
Education and Early Intervention Services?
Special education is defined as instruction, provided at no
cost to the parent, to meet the unique educational needs of a
child (not the family). This education is defined by an
Individual Education Plan (IEP).
Early intervention services are designed to meet the
developmental needs of an eligible infant or toddler and the
family needs which are related to enhancing the child's
development. The services are provided according to an Individual
Family Service Plan (IFSP). Whatever services are appropriate
are, therefore, required and must be included in the IFSP. This,
however, does not mean that all costs are covered by public
funds. The law provides that some of the costs can be billed to
private insurance coverers, some will be covered by Medicaid, and
some costs may be paid by the family according to a sliding fee
scale. Having payment options is a different way of defining the
term "entitlement."
Why is Early Intervention Important?
1 . It is important for young children with disabilities to
remain with their families rather than being placed in
institutions, because that is where they are most likely to
thrive. 2. It keeps families together by providing the necessary
supports and services they need to raise a young child with
disabilities and trying to maximize the child's potential for
independent living in later years.
3. It saves money in the long run as the child and the family
develop the skills to live, work, and play together in the
community.
4. The costs of special education services in the school or of
placing a child outside the home are far greater than the costs
of early intervention.
Why Do We Need a Statewide Interagency
System?
This is the model for a single-entry system and coordinated
service planning. Families of infants and toddlers with
disabilities can find and access any of the supports and services
necessary to care for their child at home. An interagency,
cooperative, family-focused system is a practical and
cost-effective system for Minnesota taxpayers. Public and private
agencies on state and local levels have found the collaboration
effective.
In Minnesota
The History
1986 ... Part H of Public Law 99-457 was enacted by Congress.
States were given five years to plan a statewide early
intervention system.
1987 ... Minnesota legislature passed a law mandating special
education to eligible children beginning at birth.*
1988 ... Minnesota legislature passed a law requiring a
coordinated, interagency mission for serving young children.
1991 ... Federal law allowed states to extend full
implementation for two more years. (Year 4 of the five-year plan
could be extended if states were not ready to go to Year-5, full
operation.)
1993 ... Minnesota legislature amended state statutes to
clarify and reorganize the language which supports the second
year of extended participation in Year 4.
NOW ... Minnesota is currently in its second year of extension
of Year 4, and, since 1987, has received a total of $6,563,620
federal dollars to develop a statewide system by June 1994.
Minnesota needs to enact legislation for Year 5 in order to
receive continued federal dollars and to ensure that infants and
toddlers with disabilities and their families receive the
appropriate supports and early intervention services.
Minnesota has always been a leader in the delivery of services
to children and families. However, we are behind other states in
our commitment at this point. Forty-two other states have already
moved to Year 5 (full implementation). All of our Midwest
neighboring states have signed on ... North and South Dakota,
Iowa, Wisconsin, Illinois, and Michigan. Along with Minnesota,
the states that have not decided about Year 5 are Kentucky,
Virginia, South Carolina, Georgia, and Alabama. Only one state,
Mississippi, has not chosen to go ahead with the Part H early
intervention.
Although Minnesota has been a "birth mandated" state
(providing education and related services to all children with
disabilities beginning at birth) since 1987, we are one of only
seven states which has such legislation.
We Have Already Lost Money by Delaying Our Decision... We
Could Lose Even More
Federal Dollars Not Claimed by Minnesota Due to Year 4 Part H
Status
Who Is Eligible for Part H Services in
Minnesota?
Children from birth up to their third birthday who demonstrate
developmental delays (meeting the criteria of one of the
disability categories such as autism, hearing impaired,
physically impaired, emotional or behavioral disorders).
Who is Not Eligible for Part H Services
in Minnesota?
The federal law gives states the options to include (as
eligible) children with diagnosed conditions having a high
probability of resulting in developmental delay and children at
risk of substantial delay if early intervention services are not
provided. However, at this time Minnesota has not exercised these
options.
What Does Year 5 Mean to Minnesota
Children and Families?
Currently all eligible children (birth-21) are entitled to
special education in Minnesota. Year 5 would entitle eligible
infants and toddlers and their families to an appropriate range
of early intervention services.
Services must be appropriate, that is: (a) tailored to meet
the unique needs of the eligible infant or toddler and his or her
family; (b) designed to enhance the development of the child and
the family's capacity to meet the child's special needs; (c)
selected in collaboration with the family; (d) provided under
public supervision by qualified personnel following an
individualized family service plan; and (e) provided, to the
maximum extent appropriate to the child's needs, in the natural
environments in which infants and toddlers without disabilities
ordinarily participate.
If services are appropriate, they are required and must be
included in the IFSP.
Minnesota must make a decision this year!
What should we do?
The Governor's Interagency Coordinating Council, along with
the Coalition for Year 5 and many other parents, advocacy groups,
and public and private early intervention service providers,
strongly supports full implementation of Part H.
Part H seems to be the way to go ... through a single point of
entry and coordinated service planning, families of infants and
toddlers with disabilities can discover and use the variety of
services and supports necessary to care for their child at home.
Part H has provided a valuable foundation for a statewide system
of early childhood intervention.
If we are to move to full implementation (Year Five) status in
the Part H program, it must be now.
Minnesota will not have the option to apply for another
extension of the planning phase. If the 1994 legislature does not
commit Minnesota to full implementation, the consequences will be
negative and costly.
Failure to pass full implementation (Year 5) legislation in
1994 will result in more than the loss of federal funds. If we
end our participation in Part H, Minnesota will need to spend new
resources to make up what was lost. If Minnesota elects to stay
in this program, an increase of $2 million over current federal
funding will be provided for an annual total of $3.4 million in
federal dollars.
Passage of state legislation to participate in Year 5 will
help assure that families need not return to a fragmented system
that results in duplication of services and higher costs.
Minnesota is already providing many of the Year-5 services.
Because of our concerns and because we are often leaders in
program development, we actually deliver more services to
families and children than many of the states already in Year 5
of Part H. Passage of state legislation to participate in Year 5
will help assure that families need not return to a fragmented
system that results in duplication of services and higher costs.
Parents and providers have learned the advantages of a
coordinated system, so it is doubtful that they would readily
accept sliding back.
Why the Hesitation? Why Not Just Do It?
With all this positive information, why are our legislators
and state agency people dragging their feet? What are they
waiting for?
1 . Someone to offer to pay the bills. We don't know how much
will it cost if all eligible children and their families really
come to collect the services. The federal dollars may not pay the
whole bill, so how much will it cost Minnesota? There is a
legislative fiscal study currently underway to help answer this
question, but we do not anticipate that a large number of
children will be identified if we go into Year 5 because
throughout the six years since Part H began, we have developed
extensive child find efforts.
In fact, there was very little difference in the numbers of
children identified between 1991 (2,199 children identified) and
1992 (2,354 children identified) ... a difference of only 155
children.
Suppose there are "many" children who have not been
identified and are not receiving services. Is it our goal to keep
them hidden so we don't have to meet their needs? That would be a
moral outrage!
2. Someone to prove that early intervention will pay off and
save money in the long run. How many times do we have to hear
that "an ounce of prevention is a pound of cure"?
Surely, by now we know that "a stitch in time saves
nine."
3. Assurance that comprehensive services, coordination, and
collaboration will really work. It is working now, all across
Minnesota. In addition, there are numerous other initiatives in
the state that are working toward interagency collaboration. Part
H will serve as a model for these efforts.
We Know Now...
We can no longer wait! The child and its family who needs
these services cannot wait.
In just a few years today's infant or toddler will be in
school.
If we have not helped that child and that family, the
education system will be faced with greater disability-related
problems that could have been attended to earlier.
If we have not helped that child and that family, the social
service system will be dealing with 5 some public awareness child
find system complicated family issues that develop after several
years of frustration and disappointment.
If we have not helped that child and that family, the juvenile
courts will be dealing with children and families that just don't
fit into the non-system.
We must tell our legislators that we believe in Part H and
that we want to go all the way into Year 5. We must make
ourselves heard. We must work together to support passage of Year
5 legislation with full funding. (See the back of this newsletter
to find out what you can do.)
How Does Part H Affect Staff Training?
Putting Part H into action is a challenge to current service
delivery systems (e.g., the mandate of a family focus and the
need for interagency collaboration). It requires that infants and
toddlers with disabilities receive services in natural
environments, such as their homes, community settings, and
programs in which children without disabilities participate.
Because research and development in the field continue to
change very rapidly, training will be a lifelong proposition for
those working in this field.
There are many persons from numerous disciplines currently
working with infants and toddlers whose basic original training
was not specific to children with disabilities. All practitioners
who work with infants, toddlers, and their families (in settings
ranging from child care facilities to newborn intensive care
nurseries) need up-to-date, specialized preparation, meaningful
inservice training, and high-quality continuing education
opportunities.
Because research and development continue to advance very
rapidly, training will be a lifelong proposition for those
working in this field. Specialized training is critical to staff
performance to assure improved developmental outcomes for infants
and toddlers.
The overall goal continues to be to enhance the competency and
sensitivity of providers and systems.
The Minnesota Governor's Interagency Coordinating Council on
Early Childhood Intervention appointed a CSPD (Comprehensive
System of Personnel Development) Committee to evaluate current
professional and paraprofessional inservice and preservice
training. For the past six years, they have been assessing
educational needs and training personnel. The overall goal of the
CSPD committee continues to be to enhance the competency and
sensitivity of providers and systems to infants and toddlers with
disabilities and their families.
Our Family's Experience
With Early Intervention
by Lori Guzman
Our daughter, Alexandria, was born in 1988, after planning for
Part H had already begun, so our family is lucky to have been a
part of Minnesota's progress in moving towards full
implementation of Part H.
Alex was born with Cornelia DeLange syndrome. At 3 months she
had congestive heart failure and then struggled until she was 18
months when her respiratory system collapsed, requiring a
ventilator to keep her alive. Also diagnosed with mental
retardation and both vision and hearing impairments, she was not
expected to walk, talk, or even live.
She is very much alive today and takes joy in living; she even
walks and is using some ASL signs. Our family is intact, and we
are extremely proud of our daughter and love her dearly. Our team
of supporters was huge, including professionals from every
imaginable discipline (nurses, pediatricians, early childhood
special education teachers, occupational therapists, respiratory
therapists, physical therapists, speech therapists, teachers of
hearing impaired, social workers, etc.).
As Part H moved forward, we have seen a fragmented,
time-consuming service delivery system become a plan of
collaboration between agencies.
During the first year of our experience, two words could
describe the service delivery system: forms and meetings. Today
the word is teamwork. To begin, we had to fill out forms for at
least five agencies, each asking for the same information yet
requiring separate team meetings, each with different members. We
attended more than 14 team meetings a year! Today, in the Part H
system, we are a part of three teams.
As Part H moved forward, we have seen a fragmented,
time-consuming service delivery system become a plan of
collaboration between agencies. Delivery of services is now more
complete, easier to access, and much more considerate and
respectful of families, children, and their needs. It is easier
to navigate the maze of services, and we, as a family, have the
right to define and choose what services are needed for not only
our child with a disability, but also our family so that we can
remain together.
On the Director's Mind:
Getting in the Last Word
by Richard Weinberg
Two decades ago, in response to increasing public interest in
and commitment to young children, CEED was established. A
collaboration among University faculty and students across a wide
range of disciplinary units and community and agency
professionals, CEED has represented well what can happen when
folks work together towards a common goal. In this case, our
vision has been improving the lives of young children and their
families by enhancing the efforts of professionals and leaders
who work with these populations.
Over 20 years, CEED's resume has grown substantially,
reflecting the changing needs of our constituents and the
social/political zeitgeist of the times. Our rich tradition has
included the Minnesota Roundtable on Early Child Education; a
wide range of continuing education programs including the Bush
Foundation-funded Professional Growth Institutes, Career Growth
Fellowships, and Project CEED, which extended to communities in
Montana, Nebraska, North and South Dakota as well as Minnesota; a
resource library; and Early Report, among others. However, I
believe that beyond these unique, targeted programs, the major
legacy of CEED is the extensive network of professional
relationships that have been developed during the years. Within
Minnesota and nationally, CEED has established itself as a
connecting point and resource for linking people, reinforcing
ideas, and facilitating cooperative ventures.
This is my last editorial as Director of CEED. After 20 years
as Associate Director, Co-Director, or Director, I believe it is
time for new direction and leadership. Mary McEvoy, Associate
Professor of Educational Psychology and Chair of the College of
Education Committee on Early Childhood Education, has been
designated as Acting Director of CEED. Her high energy level and
creativity are matched by a strong commitment to serving the
needs of young children, and their families. In my continuing
roles as Chair of the Steering Committee of the Children, Youth,
and Family Consortium and Director of the Institute of Child
Development, I intend to be a strong supporter of CEED and its
future agenda.
Finally, thank you to some special friends and colleagues:
Jack Merwin, Bill Gardner, and Bob Bruininks, the three Deans of
the College of Education with whom I have worked ... their
support and encouragement were essential and appreciated; Shirley
Moore, my mentor, colleague, and friend who taught me what gentle
leadership is all about; and Erna Fishhaut, CEED's first mate,
who has helped steer its course with unmatchable commitment and
enthusiasm. I raise my glass to toast CEED's next 20 years ...
may it continue to thrive.
What Can You Do?
Talk to parents of children who have disabilities. Talk to
parents of children who want their children to care about others.
Talk to teachers, nurses, social workers, and other service
providers. Understand the issues.
Look at the possible consequences with or without full
implementation of Year 5.
Act like an advocate.
Call your state senator and representative. Call the
Commissioners of Health, Human Services, and Education. Tell them
what you think Minnesota should do.
Remember that a legislator figures each call from a
constituent represents the thinking of about 5,000 people. A
personal letter to an elected official stating a personal
viewpoint is an even more powerful message.
For more information, contact:
Minnesota Governor's Interagency Coordinating Council, (612) 297-
5979
Coalition for Year 5, c/o PACER Center, (612)827-2966 or toll
free in Minnesota (800)53-PACER
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Fall 1993