Running head: NEEDS ASSESSMENT 1

Needs Assessment and Program Development Plan for High School Students with Down
Syndrome
Gretchen Kempf, Justine Macready, Jenna Syverson
The University of Scranton















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Introduction
This proposal focuses on the development of an occupational therapy (OT) program that
aims to meet the occupational needs of a specific underserved population. Our selected
population constitutes adolescents in high school with Down syndrome in Northeast
Pennsylvania. According to Erik Erikson (1968), individuals in high school are in the adolescent
stage of life. This stage involves of becoming emotionally independent from parents and other
adults as well as preparing for the future. In order to maintain equal opportunities for all students,
our population will include both males and females of all ethnicities and socioeconomic
backgrounds.
Literature Review
Transitioning is a process that individuals in society experience constantly throughout
their lifetime, whether it is in a school, the workplace, or living environment. Adolescents with
intellectual and developmental disabilities constitute a large population of high school students,
and it is vital that these students are given access to sufficient transition planning and services
(Brinckerhoff, 1996). According to the National Down Syndrome Society (2012), the transition
from high school to either post-secondary education or employment, is one of the most important
and challenging experiences that individuals with Down syndrome will face. Taking adequate
time to plan and prepare appropriately are the most successful ways to mitigate stressors that are
often associated with change, especially for a population in which change is particularly difficult
to understand and manage (Brinckerhoff; National Down Syndrome Society).
In the high school setting, students work to meet their educational goals with the help of
OT, which is mandated by the Individuals with Disabilities Education Act (IDEA). OT services
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help students reach their goals by improving perceptual, cognitive, and motor skills, as well as
addressing prevocational skills. It is important that students participate in prevocational activities
to develop appropriate social skills and habits that will lay the foundation for a successful work
performance in a post-school world (AOTA, 1988; Small, Raghavan, & Pawson, 2013).
Programs often address preparation for occupational choice, utilizing coping strategies,
developing a sense of autonomy and learning how to create or alter the environment to maximize
productivity (Small, Raghavan, & Pawson; Campbell, Missiuna, Rivard, & Pollock, 2012).
According to Campbell et al. (2012), a new school-based delivery model known as Partnering for
Change, has the potential to enhance occupational therapists provision of collaborative care.
This model shifts services away from fixing impairments towards an approach in which the
therapist works collaboratively with teachers to change the classroom environment and enhance
participation (Campbell et.al).
Sufficient transition planning and educational programs are crucial in helping those with
developmental and intellectual disabilities become self-supporting in our society. It is crucial
that these programs are implemented in both high schools and post-secondary colleges and
universities. Administrators in higher education must comply with regulations and facilitate
programs that adhere to the mandates specified in the American with Disabilities Act (ADA) and
IDEA (Bowman & Marzouk, 1991; Dolyniuk et al., 2002). Despite these mandates, many
transition programs do not always provide equal access and opportunity for students to gain
valuable social experiences with their same-aged peers. Students rarely have the opportunity to
practice social skills within appropriate vocational and educational contexts (Dolyniuk et al.).
Programs should be developed from a holistic perspective and allow students to acquire more
appropriate behaviors and skills within their social environment through observation, self-
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regulation, practice, and problem solving (Bowman & Marzouk; Dolyniuk et al., 2002).
Although occupational therapists in schools often work with students individually to help them
adapt to change in their lives, they can additionally work with educational systems in planning
and implementing programs related to the ADA that will better fulfill these individuals needs.
By identifying barriers within school systems that prevent individuals with a learning disability
from engaging in major life activities, occupational therapists can help to restructure the school
environment and make appropriate accommodations for these individuals (Bowman &
Marzouk).
Key informant Jack Kirby worked in a learning support classroom for 19 years and an
Autistic Support classroom for 2 years before taking a position in a program called Students On-
Campus Achieving Results (SOAR) at Marywood University. According to Mr. Kirby, although
high schools have taken steps to better suit the needs of students with disabilities, there is still
room for improvement. Mr. Kirby discussed many reasons he found the university program to
be better suited for students with developmental and intellectual disabilities than the high school
programs he used to be involved with in this area. The SOAR program enables students to attend
a work/job site located on Marywood's campus to receive job training. Since SOAR is located on
a university campus, students are provided the opportunity to interact with age-appropriate peers.
Programs like these are helpful in providing students with necessary skills that may broaden
employment opportunities. However, without such community-based programs implemented in
high schools, students do not have the basic skills to build upon (J. Kirby, personal
communication, February 25, 2014). The university programs involve community-based
activities which consist of using public transportation, visiting shopping malls and grocery
stores, visiting job fairs and Career Link. In addition, they participate in a simulated independent
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living situation in a university apartment (J. Kirby, personal communication, February 25, 2014).
By participating in these programs, students not only gained crucial skills which increased their
independence within their community, but they also gained a greater understanding and sense of
self-determination and self-advocacy. Mr. Kirby felt passionate regarding these two concepts. He
stated that self-determination and self-advocacy could be better integrated into the high school
programs in this area, especially since he has seen such significant results in the SOAR program
when utilizing these concepts (J. Kirby, personal communication, February 25, 2014). According
to Johnson (2002) high school programs lack the ability to provide students with opportunities
for full participation in postsecondary education and employment. This lack of opportunity
causes those with disabilities to struggle with obtaining secure jobs, accessing postsecondary
education, living independently or interdependently, accessing community services such as
healthcare and transportation, and participating fully in the community (Johnson et al, 2002).
Needs Assessment and Focus of OT Program
Down syndrome is the most common chromosomal condition with more than 400,000
people diagnosed in the United States (National Down Syndrome Society, 2012; Yamkovenko,
2008). Individuals with Down syndrome typically display a short attention span, poor judgment,
impulsive behavior, slow learning, delayed language and speech development, delayed motor
planning, poor gross motor skills and low tone (Fidler, Hepburn, Mankin, & Rogers, 2005;
National Institute of Child Health and Human Development, 2012). This makes it difficult for
them to engage in meaningful occupations and participate in regular classroom settings with their
typically developing peers. They generally enter high school at the age of 16, and depending on
the severity of their impairments, some graduate after the typical four years, but others continue
until the age of 21 (Kardos & White, 2005; National Down Syndrome Society, 2012). Life
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expectancy has increased for those living with Down syndrome from 25 to 60 years old, which
underscores the need for participation in programs to advance life skills and allow individuals to
live life to their fullest potential (National Down Syndrome Society; Yamkovenko, 2008). The
above literature review emphasizes what services are currently being provided to those with
intellectual and developmental disabilities in high schools, but more importantly indicates
particular needs that are not being sufficiently met. These needs are as follows: life skills that can
be generalized in a variety of settings, opportunities for students to gain valuable social
experiences with their same-aged peers, opportunities to practice learned skills within real social
settings and acquire further skills through observation, self-regulation, and problem solving, and
lastly, vocational training based on students individual strengths and interests. These needs
should be prioritized based on each students particular plans and goals for the future rather than
establishing a predetermined order of significance.
According to the overarching statement incorporated in the OT Practice Framework 2nd
Edition (OTPF-2), OT services should aim to support health and participation in life through
engagement in occupation. However, there is still limited current research on transition
programs in the school systems that help individuals with developmental and intellectual
disabilities successfully engage in meaningful occupations and prepare them with life skills they
will need once they finish high school (Dunn, 1988; Spencer, 2001). It is evident that there is a
need for syndrome-specific school-based programs, as general school-based programs do not
necessarily address the specific needs of students with Down syndrome that will assist them in
reaching their full potential.
The OTFP-2 defines client factors as specific abilities, characteristics, or beliefs that
reside within the client and may affect performance in areas of occupation (American
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Occupational Therapy Association, 2008). These underlying client factors can be affected by the
presence of disability. Therefore, in order for a school-based program to be beneficial for a
student with Down syndrome, it must address areas in which someone with this particular
diagnosis is experiencing deficits. Client factors are an important aspect of any therapeutic
intervention because they affect performance skills, performance patterns, activity demands, and
contextual and environmental factors, which in turn affect a students ability to engage in
meaningful occupations throughout their lifetime (AOTA). Performance skills are the abilities
clients demonstrate in the actions they perform. Students with Down syndrome experience many
deficits in motor and praxis skills and cognitive skills. General school-based programs address
not only motor and praxis and cognitive skills, but sensory-perceptual skills, emotional
regulation skills, and communication and social skills as well (AOTA; Yamovenka, 2008). A
student with Autism, for instance, may benefit greatly from a class that addresses sensory and
communication issues. However, this may not be as beneficial for a student with Down
syndrome who does not have significant deficits in these areas. Therefore, it is important that
syndrome-specific programs be established at the high school level to allow students to explore
their particular needs and interests. Syndrome-specific programs would enhance students
abilities to engage in meaningful occupations in and out of schools by addressing and identifying
students strengths, needs and preferences in terms of seeking post-secondary education,
employment, and housing options, based on their individual deficits. These programs would
further develop an awareness of various skills that are needed in order to match the student's
desired post-secondary educational program, job and living arrangement as well as train and
prepare them for the planned course of action. School-based programs need to identify and set
specific long-term goals and identify smaller, measurable steps along the way to aid in a smooth
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transition. According to the National Down Syndrome Society (2012), important elements such
as specialized skills (learning to operate a certain piece of equipment) and basic skills
(punctuality and working well with others) are missing from high school programs although
there is a need for them. These programs must also be implemented in a way that allows the
student the opportunity to interact with typically developing, same aged peers.
OT services seek to provide opportunities for individuals to engage in occupations that
promote health and development. Occupational therapists have unique training in helping
individuals engage in daily activities throughout the lifespan, with an emphasis on improving
strengths rather than limitations (Dolva, Coster & Lilja, 2004). OT plays an important role in
assisting individuals with Down syndrome from diagnosis to adulthood, as it helps these
individuals master skills for independence, focusing on areas of self-care like dressing and
feeding, fine and gross motor skills, school performance, and play and leisure activities
(Yamkovenko, 2008). Whether provided individually or in groups, services may address
development of vocational skills and a sense of autonomy, coping strategies and stress
management, improvement of social and work skills and learning how to adapt the environment
to maximize potential (Bruni, 2001). Individuals with Down syndrome are likely to receive care
not only from OT but also from a team of health professionals, including, physicians, special
educators, speech therapists, physical therapists, and social workers (Dolva, Coster, & Lilja,
2004). Occupational therapists have constant communication with the team, along with the
adolescent and family members. Services are client-centered, interactive and based on core
values of altruism, equality, freedom, justice, dignity, truth and prudence (Spitzer & Parham,
1998). Basic living skills and social skill training are two needs that would be best met by unique
services provided by OT to foster independence and successful transitioning to adult occupations
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(Neistadt, 1987). It is crucial that this population is provided with transition planning and
services that aid in meeting the requirements of their daily activities of self-care, leisure, learning
and work after high school in various environments (Spitzer & Parham, 1998). Unique concerns
and distinctive contributions of the occupational therapist include helping students attain the
skills and environmental supports needed to successfully participate in daily occupations as
students, homemakers, workers or family members (Dolva, Coster & Lilja, 2004). Life skills are
essential to be taught and practiced before individuals start going out on their own. The overall
focus of this program is to encourage high school students with Down syndrome to approach life
with self-esteem facilitating a smooth transition into adulthood. This program will bridge the gap
between clients ability to learn and successfully engage in meaningful occupations. Program
objectives and goals will prepare clients for living independently by improving life skills
performance and becoming integrated into the community.








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References

American Occupational Therapy Association. (2008). Occupational therapy practice framework:
Domain and process (2nd ed.). American Journal of Occupational Therapy, 62, 625683.

Bruni, M. (2001). Occupational therapy and the child with Down syndrome. Retrieved February
27, 2014, from http://www.ds-health.com/occther.htm

Campbell, W. N., Missiuna, C. A., Rivard, L. M. & Pollock, N. A. (2012). Support for
everyone: Experiences of occupational therapists delivering a new model of
school-based service. Canadian Journal of Occupational Therapy, 79, 51-59.

Dolva, A. S., Coster, W., & Lilja, M. (2004). Functional performance in children with Down
syndrome. American Journal of Occupational Therapy, 58, 621629.

Erikson, E. H. (1968). Identity: Youth and Crisis. New York: Norton.

Johnson, D., Emanuel, E., Mack, M., Stodden, R., & Luecking, R. (2002). Current challenges
facing secondary education and transition services: What research tells us. Exceptional
Children, 68(4), 519-531.

Neistadt, E. M. (1987). An occupational therapy program for adults with developmental
disabilities. American Journal of Occupational Therapy, 41(7), 433-438.

National Down Syndrome Society. (2012). Down Syndrome. Retrieved February 27, 2014, from
http://www.ndss.org

Spitzer, S. & Parham, L., D. (1998). Statement: Occupational therapy for individuals
with learning disabilities. American Journal of Occupational Therapy, 52(10), 874-880.

Yamkovenko, S. (2008). The role of occupational therapy with persons with Down syndrome.
American Occupational Therapy Association. Retrieved February 27, 2014, from
http://www.aota.org/en/About-Occupational-
Therapy/Professionals/CY/Articles/Down.aspx






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