DEVELOPMENT AND EDUCATION ISSUES OF CHILDREN WITH SEVERE AND PROFOUND

INTELLECTUAL DISABILITY

“

”

MAMA EXHORTED HER CHILDREN AT EVERY OPPORTUNITY TO ‘JUMP AT DE SUN.’ WE MIGHT NOT LAND ON THE SUN BUT AT LEAST WE WOULD GET OFF THE GROUND.

- Zora Neale Hurston

CHALLENGES PARENTS ENCOUNTER

The greatest challenge a parent of a child with severe

and profound intellectual disability faces is to provide

quality of life and the support that child needs to

achieve a life worth living (Maes, Lambrechts, Hostyn,

& Petry, 2007).

The natural result of living with PIMD can be feelings

of isolation and loneliness (NICHY, 2003).

The desire and need to collect as much information as

possible can be overwhelming as described by the

“Unplanned Journey” in NICHY (2004).

The countless professionals that have to be seen

regularly can be more than a parent expected

(Downing, 2010).

Parents who volunteer in the classroom can be a great

support to the teacher and class, so do not be afraid to

get involved (Downing, 2010)!

STUDENT INFORMATION

According to Downing (2010, p. 101), teachers are the most “important factor for a

student’s learning” and; therefore, a quality teacher that is caring and compassionate

should be sought out. The general education teacher will be taking the same

responsibility for your education as the special education teacher does, so take the time

to listen and learn from both (Downing, 2010).

The students in class are peers and their support and assistance is vital to learning

(Downing, 2010).

One area of concern for students with PIMD is undernutrition; therefore, be sure to eat

every time it is offered at school (Axelsson, 2014).

The nature of PIMD will make it necessary to have assistance every day; therefore,

supplemental services should be seen as encouraging since they will relieve the family

of the stress that PIMD places on a home (Axelsson, 2014).

INTERVENTIONS

Professional• “Surgical and orthodic

interventions” (Maes, et. al.,

2007)

• Odyssey Now (ON) program

for activities and personal

development (Maes, et. al.,

2007)

• Direct support staff

increasing choice

opportunities as Maes, et.

al. (2007) articulates

• Understanding the IEP

goals and related training

for working with students

w/PIMD (Downing, 2010)

Parental• Parent volunteers are

vital (Downing, 2010)

• Learning the way that

the curriculum is

designed to be adapted

for students (Downing,

2010)

• Teaching the child the

life skills and

adaptations necessary

to survive (Gromisch,

2012)

Educational• The special and general education

teachers can work together to

provide necessary interventions

• Response to Intervention

• Adaptations to the curriculum

• Positive environment (PEP) as

indicated and expounded by Maes,

et. al. (2007) & social interactions

• Voice output communication aids

(VOCA) (Maes, et. al., 2007)

• Seating arrangements (Maes, et.

al., 2007)

• Paraprofessional support and

teaching intervention

• Peer intervention

ISSUES WITH INTERVENTIONS

Professional

• Scheduling conflicts

• Student misses a lot of

the lesson while out

• Collaboration with the

IEP team and family

• Conflicts in schools of

thought regarding the

most beneficial strategy

for the student

• Behavioral issues

• Health & safety issues

Parental

• Parents may stay out

of the picture when

support as a volunteer

can be vital

• Parents that work with

students may lack the

training necessary to

help by learning about

the disability

Educational

• Paraprofessional support and

lack of training

• Scheduling conflicts for

special education assistants

and related support providers

• Coteaching conflicts and lack

of planning

• Peers may not always be

interested or may use it as a

way to avoid learning

themselves (Downing, 2010)

• Paraprofessionals may hover

or provide so much support

that the student becomes

dependent on their assistance

(Downing, 2010)

CURRICULUM PLANNING AND IEP DEVELOPMENT

When RtI reveals the need for support and assistance, the need for adapting the

curriculum becomes a key factor in teaching and instruction because an abstract

curriculum does not meet the child’s individual needs (Downing, 2010).

The most profound way to adapt the curriculum to meet those needs is by

“identifying the big ideas for learning,” simplifying those ideas, and providing direct

instruction (Downing, 2010, p. 69).

The IEP is designed to make education meaningful; therefore, it takes more

planning and collaboration on the part of special and regular education teachers to

implement the law in education with students with PIMD (Downing, 2010).

The IDEA mandate requires that students with PIMD be included in the general

education curriculum; therefore, any separation from the class may be a violation of

the student’s rights (Downing, 2010).

CURRICULUM PLANNING AND IEP DEVELOPMENT CONT…

Lessons should be planned according to three different aspects for students with

PIMD; presentation with different modes of learning, access provided from different

ways, and different ways to demonstrate learning (Downing, 2010).

The Universal Design for Learning (UDL) should be employed to ensure that all

students have access to the general education curriculum (Downing, 2010).

The student with PIMD can make contributions to the class in ways that are

thematic, social, contributing, and distinctive; these should be incorporated

throughout the day (Downing, 2010).

Progressive questioning should be used in which the questions start out simple and

are asked to the student with PIMD then progress to harder questions addressed to

regular education students so that all are included (Downing, 2010).

INSTRUCTION

Instructional and

Teaching Issues

• Physical considerations

of the individual child

and the classroom

environment design

• Visual impairments and

the need for necessary

supports in all

environments

• Prompting, shaping,

grouping of students as

well as modelling

instruction for students

(Downing, 2010)

Curriculum Planning

Issues

• Coteaching issues such as

collaboration and planning,

perspective, and time

• Determining the best way

to teach the skills that the

IEP have targeted

(Downing, 2010)

• The way that adaptations

will be integrated into the

lesson and the child’s

individual needs (Downing,

2010)

IEP Development

Issues

• Making the curriculum

and environment fit the

IEP goals

• Consideration of the

prompts required for the

student

• Visual requirements

• Physical needs and

considerations so that

students can be actively

involved in all lessons

(Downing, 2010)

EDUCATIONAL GOALS AND OUTCOMES

One goal for students with profound intellectual and multiple disabilities is to learn

to receive support and be flexible with it so that as an adult it is a natural outgrowth

of a lifetime of assistance (Downing, 2010).

As Downing (2010), another crucial goal for students with PIMD is to learn to

generalize learning so that what they learn in one setting they are able to apply to

another.

“It takes a village” to raise a child and much more when they have PIMD; therefore,

the need for support and assistance should become a natural extension of the child’s

life (Downing, 2010, p. 99).

The interaction and engagement of the child in the curriculum and school life, social

competence, and functional skills is essential to maintaining meaningful IEP goals

(Downing, 2010).

QUESTIONS?

Are there any challenges that cause your family stress

not mentioned in the first few slides?

Are there any concerns with malnutrition or lack of

support that you think need to be addressed with your

child specifically?

Do you feel any sense of congruency when you read

the quote at the beginning of the presentation?

Are there any signs of interaction that you feel are

misunderstood with your child?

Would you and your child be willing to be a part of a

“Breakfast with ……”?? This would be a good way to

establish relationships with those who are non-

disabled for your child.

REFERENCES

Axelsson, Anna. (2014). Children with profound intellectual and multiple disabilities and their

participation in family activities. Retrieved from http://www.diva-

portal.org/smash/get/diva2:714504/FULLTEXT01.pdf

Downing, June. (2010). Academic Instruction for Students with Intellectual Disabilities. Belmont,

CA: Wadsworth.

Gromisch, Elizabeth. (2012). An intellectual disabilities resource guide for teachers and parents.

Bright Hub Education. Retrieved from http://www.brighthubeducation.com/special-ed-learning-

disorders/124800-resources-for-teaching-and-parenting-students-with-intellectual-disabilities/

Maes, B., Lambrechts, G., Hostyn, I., and Petry, K. (2007). Quality-enhancing interventions for

people with profound intellectual and multiple disabilities: A review of the empirical research

literature. Journal of Intellectual & Developmental Disability. Vol. 32. Issue 3. pp. 163-178.

National Information Center for Children and Youth with Disabilities. (2003). Parenting a child

with special needs. Retrieved from http://www.familyvoices.org/admin/work_caring/files/nd20.pdf