Article - A School-Based Care Management Service for Children with Special Needs

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A School-Based Care Management Service for Children with Special Needs.

Author/s: Jena C. Barrett

Federal mandates have changed the face of the American classroom. Classroom

teachers and school health nurses who previously have had little or no

interaction with children with medical or physical disabilities are being

asked to assume increased responsibilities by including children with

special needs in the regular public classroom. Coordination with agencies,

health care providers, and families is essential for the education of

children with special health care needs. Colleges of nursing, in efforts to

teach nursing students about chronic illness and disability, offer one

solution to the need for that coordination. This article describes how one

college's implementation of a care management program may serve as a model

for others trying to coordinate services for children with special needs in

systems with limited resources. Key words: care management, inclusion,

special health care needs, tertiary care

FEDERAL LAWS AND regulations ensure all children access to a free public

education in the least restrictive setting and require programs and services

for students with disabilities. The result is an American classroom, which

includes children with chronic illness and disability.[1] That classroom is

often the regular public classroom, where the teacher and school health

nurse have had little or no previous interaction with children having

medical or physical disabilities. Nevertheless, they are being asked to

assume increased responsibilities by including children with special needs

in the regular classroom.[2] About 10% of the school-age population (more

than 5 million children) have disabilities which qualify them for special

education services under the Individuals with Disabilities Education Act

(IDEA 1990).[3] These children are a heterogeneous population providing a

myriad of challenges for the educational system.[4]

Thus, schools have not only a moral but also a legal obligation to meet the

special needs of these children. Coordination with agencies, health care

providers, and families is essential to fulfill this obligation.

Responsibility for providing services to these children rests with an

interdisciplinary team.[5] Collaboration and consultation across disciplines

facilitates a successful educational process for students by enhancing

teacher effectiveness and satisfaction, extending Teacher capacity to meet

perceived needs of students.[6] Although the leadership of a team will shift

in relation to the changing nature of the task, a consistent coordinator is

essential.[5]

The logical coordinator of the health care team for children with special

needs is the school nurse. School nurses must address acute, chronic,

episodic, and emergency health care needs of the entire population of

children in their school. Nationally, there is one school health nurse per

1,500 children. Findings from the National Survey of School Nurses and

School Nurse Supervisors indicate that insufficient nursing staff is a major

barrier to the improvement of child health. Respondents identified chronic

illness as the top student health problem at the elementary level. Moreover,

the school health nurse cannot meet the needs of these children without

assistance.[7]

This article offers one approach to providing the additional resources

needed to coordinate services for children with special needs. The author

describes the collaboration arrangement between the school system and the

college of nursing and how students are able to fill this critical role of

care manager. Finally, the success of this approach is evaluated along with

recommendations for the future.

NURSING STUDENTS AS CARE MANAGERS

As colleges of nursing move to incorporate more community-based experiences

in their curricula, and fewer pediatric inpatient experiences are available,

faculties search for relevant clinical experiences in pediatrics. One such

experience developed by the college of nursing at the University of Alabama

was that of care management of children with special needs. This experience

fit very well within a curriculum organized around levels of prevention

framework. Tertiary prevention occurs when a disability or defect is fixed,

stabilized, or irreversible. The goal of tertiary prevention is to restore

the individual to optimum level of functioning within the constraints of the

disability.[8]

It is in the semester focused on tertiary prevention that students gain

insight into the life of families experiencing chronic illness and, serve as

care managers for children with special health care needs. As care managers,

students serve as coordinators of the interdisciplinary team, working with

all aspects of a child's care and serving as liaison and conduit for the

systems.

Care management

Care coordination (or management) is an alternate term for case management.

Inclusive in most definitions of case management, or care management, are

(1) the identification of people at high risk, (2) health assessment, (3)

health care planning, (4) procurement, delivery, and coordination of

services, and (5) monitoring total care to ensure optimum outcomes.[9] These

components of the care management role best describe what the nursing

students undertake with their families.

Getting started

When this program was first conceptualized, faculty at the college met with

many members of the community to gather ideas for its implementation. They

consulted with school officials, university personnel, teachers, nurses,

physicians, clinic staff, occupational and physical therapists, parents,

children, and university students. The program was placed within a framework

of community-based action, inclusive of all contacts the children with

special needs encountered.

After review by the nursing faculty and school coordinators, the program was

ready for start up. The first component of care management is identification

of high-risk people. In the first semester of the program, school personnel

met with faculty to identify families that would benefit from care

management. Personnel from the school contacted identified families. Faculty

contacted families who were interested in being a part of the program (not

one identified family declined to be a part).

Action

At the beginning of each semester, the nursing students sign contracts with

the identified families who have a child with a chronic illness. These

contracts allow the students to access educational, social service, and

medical records; attend appointments and school with the child; administer

medication; and perform treatments with the school health nurse. Students

meet with the families and school personnel and establish goals for the

semester. They then begin work with all aspects of the child's life, serving

as liaison between the family, the school, and various agencies and

healthcare professionals.

The students complete or update health, social, and environmental

assessments on the children. The assessments occur during home visits,

school or health appointments.

Students attend individualized educational plan (IEP) meetings and

contribute knowledge about the child that might affect education. At one

such meeting the faculty and students had been to the child's home and met

with the mother several times. They were able to describe environmental

concerns from the home that influenced the child's schooling. The school

personnel were unaware of these concerns. For example, lack of electricity

made videos the teachers were sending home for the parents to watch for

instructional purposes useless. Additionally, the school was unfamiliar with

a clinic the child had attended to address her lack of communication skills.

Because the care managers had a rapport with the mother, they could share

information with the school personnel.

The school nurse benefits from students' in-depth knowledge of the child's

medical history in formulating an individualized health plan (IHP). These

plans are just now becoming a mandatory part of education for children with

special health care needs. Development of accurate and updated IHPs and IEPs

addresses two elements of the care manager role, monitoring total care, and

planning health care.

Communication among the school. agency, and family to share intervention

strategies, goals, and resources has been an integral part of the care

management program. As care managers, the CCN students have helped organize

appointments so that the child misses less school. If the child missed

school because of illness, the CCN students have served as carrier for

schoolwork and resource person for information transferral. Many of these

children do not have a telephone; personal contact is the only way of

relaying information. Schools often do not have the resources to make home

visits. Student nurses have proven invaluable in this respect.

As the care managers accompany the family to clinic and physician

appointments, they are able to relay observations of the teacher and school

health nurse. The school health nurse for one child had noticed that the

child " climbed " his legs to raise himself from the playground. The students

relayed this to the physician during a routine appointment and a diagnosis

of muscular dystrophy was eventually made. In another instance, the students

were with the child at school when the teacher noticed a small hole near the

base of the spine. The students mentioned this to the child's doctor to rule

out spina bifida. The nursing students are also able to communicate one

physician's findings to another. This is an essential part of their role as

care manager, monitoring total care and coordination of services.

Students have been able to act as care managers when their child is

scheduled for surgery. Two students worked with nurses at the hospital to

share special care information about their child, such as communication with

his augmentative device, comfort measures, and medication regime. They

undertook preoperative teaching with the child and family and participated

in the follow up after surgery ensuring that the child's new

gastrointestinal tube was properly cared for at home. They returned to

school with the child after the child's extended absence and worked with

school personnel on health care regimens and medications.

To improve quality and efficacy in health care planning for the child, the

care managers update health records at the school and seek information that

may be missing from the child's data folder. At medication administration

time, they help the nurse administer the many medicines that children with

special needs often require and help with both oral and tube feedings.

These care managers have implemented educational sessions for teachers about

body mechanics, seizures, first aid, obstructed airways, asthma, and

diabetes. They have addressed procurement of services in a number of ways.

Transportation through Medicaid or volunteer agencies has been accomplished.

Meals have been provided through the care manager's intervention with area

churches. Blankets and clothing have been gathered.

Coordination has been highlighted when a child was in transition from one

school to another. Because the care management program follows the child

from semester to semester, students were able to let teachers in the child's

new elementary school know about the child from his early-intervention

kindergarten, where students in previous semesters had worked with him. No

records were sent with the child, and the school planned an entire new

workup. The information the students brought to the school about the child's

history was invaluable.

At the end of the semester, students turn in their journals detailing their

interactions with the family. Families are kept from semester to semester

and given new care managers each semester. Continuity is maintained because

the faculty remains the same and the incoming students have the benefit of

the former student's journals.

Accomplishments

For more than a year, nursing students have worked diligently as care

managers for these special children. A total of 60 children have been served

with illnesses and disabilities which included: cerebral palsy, traumatic

brain injury, Down Syndrome, Ehlers-Danlos Syndrome, diabetes, autism,

Angelman's Syndrome, asthma, muscular dystrophy, brain atrophy, Lowe's

Syndrome, Noonan's Syndrome, Klinefelter's Syndrome, and multiple health

impairments. example, nursing students worked with engineering students to

make adaptive devices for the children that were created as part of a class

requirement for the engineering students. The devices (feeding stations,

rolling scooters, standing devices, and walkers) were donated to the school

and provided a valuable resource. Nursing students teamed with those in the

College of Social Work to work in the clinics the children attend and bring

clinic resources back to the schools for the school's use. Augmentative

communication devices, special feeding equipment, and standers were

equipment brought to the schools. Additionally, students had a wealth of new

resources to share with the school personnel.

Success

This program has highlighted the need for coordination of services in

schools. Success can be measured from several points of view: school

personnel, nursing students, parents, and children. School health nurses

have evaluated the program as positive for all involved. It has given the

nurses support in their many responsibilities and provided a conduit between

health care and education. Principals commented that having the nursing

students take responsibility for care coordination has streamlined the

children's lives and given personnel time to take on other tasks. The

teachers involved say that the best part of the program is that questions

are asked--in both directions " We all grow together, the nursing students,

the families, and the teachers, " one teacher explained.

Parents have commented that the program has been of tremendous help to them

in coordinating services, educating them about interventions, and providing

a liaison for their families to the various systems. The nursing students

have supported the families in many after-school activities, including the

Special Olympics, fairs, and pageants. The children like having their care

managers there to cheer them on and support them.

The nursing students are positive about their semester of care management.

They are given insight to a population with which they would otherwise

contact only in a hospital setting. The learning objectives for this

experience include: (1) Identify the scope of the problem and the changing

trends in the care of the child with a chronic illness or disability, (2)

discuss the coping strategies of a family with a child with chronic illness

or disability, (3) discuss the impact of a child's chronic illness or

disability on family members, (4) discuss the impact a special health care

need will have on a child in various stages of development, (5) identify

resources available to children and families. with special needs, and (6)

outline care management strategies to promote optimum health and adjustment

to a family with a child with special health care needs. At the end of the

semester, the nursing students have met these learning objectives. Their

evaluations reflect that they now have a better understanding of tertiary

prevention and care management.

RECOMMENDATIONS FOR THE FUTURE

Although the school system, the children, families, and nursing students

find this to be a successful program, all believe it can be improved. Often

the presence of a number of nursing students in one classroom has proven

disruptive to the learning environment for the children. Improving the

organization of nursing student time is needed. Students, in the future,

will coordinate classroom time so that never more than two nursing students

are in the classroom at the same time. Another modification centers on the

need for better communication with the families. Sometimes parents forget to

tell the nursing students about appointments or illnesses.

Future plans include having the nursing students contact the family at least

weekly for updates. Clinic schedules will be obtained so that the students

will know when their child will be going to the communication, feeding, or

orthopedic clinic. The appointment dates for occupational and physical

therapy also will be distributed. At the beginning of the semester, the

nursing students will ask the parents to look at their calendars and write

down all physician appointments.

SUMMARY

With the health care and educational systems undergoing extensive changes,

school-based care management service is an educational experience and a

service for the times. Nursing students gain valuable insight about

experiencing chronic illness and disability and knowledge about a variety of

resources. The children and schools benefit from the coordination of care

that is provided via this program. Care management is one answer to

optimizing health and educational opportunities for these special children.

REFERENCES

[1.] Gearheart B, Weishahn M, Gearheart C. The Exceptional Student in the

Regular Classroom. Columbus, OH: Prentice Hall; 1996.

[2.] D. Listening to today's teachers: They can tell us what

tomorrow's teachers should know. Teacher Educ Special Educ.

1990;13:3-4,149-153.

[3.] Individuals with Disabilities Act of 1990, U.S.C., S1400-1485 et seq.

(1993).

[4.] McDonnell L, McLaughlin M, on P, eds. Educating One and All.

Washington, DC: National Academy Press; 1997.

[5.] Golin A, Duncanis A. The Interdisciplinary Team. Rockville, MD: Aspen

Publishers; 1981.

[6.] Elliott S, Sheridan S. Consultation and teaming: Problem solving among

educators, parents, and support personnel. Elementary School J.

1992;92:3315-336.

[7.] Igoe J. A preliminary report of selected findings from the national

survey of school nurse supervisors. Denver: University of Colorado; 1995.

[8.] Shamansky S, Clausen C. Levels of prevention: Examination of the

concept. Nuts Outlook. 1980: February, 45-49.

[9.] Lubkin I. Chronic Illness. Boston: and Bartlett; 1998.

Jena C. Barrett, DSN, RN Assistant Professor, Nursing University of Alabama

Capstone College of Nursing Tuscaloosa, Alabama