Disclosure

Financial Relationship: I have published books in this area for which I receive a royalty; I am not receiving an honorarium for speaking on this topic today as it is my privilege to be able to speak to you about this critical topic

Nonfinancial Relationship: I am a member of the UVM Medical Center Board of Trustees & I do not receive compensation for my volunteer service

Patricia A. Prelock, Ph.D., CCC-SLP, BCS-CL

Dean, College of Nursing & Health Sciences

Professor, Communication Sciences & Disorders

Professor, Pediatrics, College of Medicine

University of Vermont

Patricia.prelock@med.uvm.edu

The Problem—Our Objectives

Getting from A to B PROBLEM: Insufficient time to individualize care that recognizes the power of individual stories

Need to understand what will improve educational & health outcomes and quality of life

Need to capitalize on a person’s strengths & that of their family to support active participation at home, school, work and in the community

Objective 1. Understand disability and your role in ensuring patient and family centered care

Objective 2. Explain your role in the care of a person-who happens to have a disability

Objective 3.. Empower yourself and others to facilitate an individual’s access to and full participation in a quality education or work life& effective health care

How do we advocate for this young

man?

In fact, children with ASD . . .

Are more likely to have unmet health care needs & family support services, delayed care & referrals, & a lack of family centered care (Kogan et al., 2008)

Live in families who report financial problems, require additional income for medical care, stop work because of their child’s condition & spend >10hrs/wk coordinating care (Kogan et al., 2008)

Have caregivers at higher risk for psychological morbidity and stress (Lovell et al., 2012; Osborne & Reed, 2009; Peters-Scheffer et al., 2012)

5

Do we understand the concept of disability?

Section 504 of the Rehabilitation Act of 1973

American with Disabilities Act of 1990 (ADA)

ADA Amendments Act of 2008

. . .as a mental or physical impairment that substantially limits one or more major life activities

Substantially limiting

• Unable to perform a major life activity

• Restricted as to the condition, manner or duration under which a major life activity can be performed

Major Life Activities

Section 504 of the Rehabilitation Act of 1973

• Caring for oneself Performing manual tasks

• Walking Seeing

• Hearing Speaking

• Breathing Learning

• Working

ADA Amendment Acts of 2008 (expanded to include . . .)

• Eating Sleeping Standing

• Lifting Reading Bending

• Concentrating Thinking Communicating

• Bodily functions (e.g., immune system, cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, & reproductive functions)

World Health Organization also defines

disability (WHO, 2001)

Impairment

Problem in body function or structure

Activity limitation

Difficulty encountered by an individual in executing a task or action

Participation restriction

Problem experienced by an individual involved in life situations

Health Condition

(disorder/disease)

International Classification of Functioning,

Disability & Health (World Health Organization, 2001)

Environmental

Factors

Personal

Factors

Body function & structure

Activities

Participation

So what is our responsibility

as parents & providers who

support those with

disabilities?

What is our responsibility as leaders who

advocate for & inspire change?

You don’t need a title to be a leader.

Leaders think & talk about solutions.

Followers think & talk about the problems.

Brian Tracy

Leadership is influence.

John C. Maxwell

First, Let’s Broaden the Desired

Outcomes

Body Function & Structure Participation

Second, know the influences on TX Decisions .

. .

FOR EXAMPLE, in families affected by ASD

• Parents choose interventions with and without an evidence base (Miller et al., 2012)

• Parents are most concerned about (Mackintosh et al., 2012):

Treatment effectiveness

Provider relationship

Access to desired treatments

Costs, medication concerns & stress

• Families’ SES relates to their access to services (Irvin et al., 2012)

• Influences on families’ TX choices (Patten et al., 2013):

Severity of child’s sensory issues—leads to earlier intervention

High education associated with diet/vitamin TX & greater number of services

Third, understand the 'F-words’ in Disability (Rosenbaum & Gorter, 2011)

Function

Family

Fitness

Fun

Friends

Future

Finally, know the individual’s story

Nicole=> 9 year old with Down syndrome & celiac disease

Karla=> 13 year old with a brain tumor and TBI

Allison=> 18 year old with cerebral palsy and seizure disorder

James=>51 year old with Down

syndrome, Alzheimer’s disease

Body function & structure Activities

Personal Factors

•Numerous doctor visits 0-3 •Special education preschool •Received PT in preschool •Receives speech-language intervention •Currently 9 years old •12 year old brother torn between protecting sister & being embarrassed

Environmental Factors

•Extended family members do not feel Nicole will fit well within their family • Mother went back to work part time •Special cooking & more expensive food for someone with celiac disease •Family likes outdoor activities •Teacher never worked with child with DS

Participation

• Teased by peers at recess • Peers unaccepting of

friendship overtures so no current friends

• Down syndrome • Celiac disease @ 3 years

associated with diarrhea, bloating, lack of weight gain, loss of appetite

• Cognitive disability • Speech & language

impairment

• Just beginning to read so unable to keep up with 3rd grade academics

• Comprehension good for routines & familiar activities

• Expresses wants & needs but intelligibility compromises involvement in class activities

NICOLE: Down syndrome & celiac disease

Knowing Nicole’s story, what doors can we

open?

How do we get Nicole from A to B?

Not achieving common

core standards

Rejection by peers

Poor intelligibility

Delayed reading

Limited & expensive

diet

Point A:

decreased

activities &

participation

Create supports that enhance

her comprehension

Build on communication

she has

Use routines &

familiar activities

Build on family

strengths

Consult with

nutritionist

Point B:

increased

activities &

participation

Body function & structure

Activities

Personal Factors

•Healthy newborn, bright, affable & independent child prior to dx •Surgery, chemo & radiation •13 year old •7 & 15 year old brothers •SLP support for speech fluency, vocabulary & language comprehension; OT & PT support

Environmental Factors

• Parents rearranged lives to accommodate Karla • Parents regular contact with physicians & teachers • Mother a nurse & moved day schedule to PT nights • Father left college when dad had heart attack to

work on family dairy farm; doesn’t trust doctors • Medical bills piling up & Quebec grandparents

don’t understand US health care • Lives in rural community

Participation

• Difficulty establishing

friendships • Increased aggression with

siblings

• Brain tumor dx at 8 years • Global dev. delays post tx • Motor Planning challenges • Decreased upper body

strength • Recent decrease in attention,

slower speech production & loss of speech fluency

• New tumor growth

• Performing below grade level

• Limitations in PE activities • Limitations in cooperative

group activities • Changing communication

compromises involvement in oral activities

Karla: Brain tumor & TBI

Knowing Karla’s story, what goals are

important?

What might be a plan for support?

How do we acknowledge the fears this family & providers may be facing?

How do we support Karla in the classroom & at home?

What are the logical priorities for services & supports?

Body function & structure

Activities

Personal Factors

• Sociable, curious, playful, sensitive, loving • Lives with mother & extended family • Multiple orthopedic & neurosurgical surgeries • Medication for seizures • Dependent on others for self care • Services since 3 include special classes,

inclusion & home schooling

Environmental Factors

• Manual wheelchair with no transfer and lift equipment in the home

• Mother has back and joint problems, works outside the home to support her family & cares for elderly parent

• Inadequate housing & limited financial resources • Lives in a rural community with no local high school • Frustration with service providers

Participation

• Enjoys camping • Likes to engage with

peers • Transportation is a

problem because of mobility issues

• Limited opportunities for socialization with typical peers

• Cerebral Palsy-spastic quadriplegia

• Seizures • Nonverbal

• Expresses needs & discomforts nonverbally

• Understands what is said but is frustrated with expression

• Has positioning difficulties that compromise breath support

• Has frequent seizures that impact attention, memory& language

Allison: Cerebral Palsy & Seizure Disorder

Knowing Allison’s story, what direction do we

go?

Body function & structure

Activities

Personal Factors

• Prior to Dx of Alzheimer’s at 48, was sociable, communicative, working,& carrying out most activities of daily living

• Had heart ablation at 50 • 4 recent seizures with medication leading to

agitation • Increased anxiety & pain • 3 other siblings died at early ages

Environmental Factors

• Mother is 83 with arthritis and heart problem • Developmental services providing community based

and home services • VNA providing palliative care support • Recently moved from OH to VT to live with sister &

brother-in-law • Access to primary care • Lives in rural community in VT

Participation

• Decreased recreational &

leisure activities (golf, swimming, bowling)

• Decreased interest in sports, movies, reading)

• Limited ability to engage in self care

• Increased seizures • Increased cognitive

dysfunction • Limited short term memory • Difficulty eating • Difficulty walking • Difficulty talking • Difficulty sleeping

• Expresses needs & discomforts inconsistently

• Fails to comprehend what is said

• Unable to complete a task independently

James: Down syndrome & Alzheimer’s disease

How do we put the puzzle pieces together for

James?

Confusing Health Care with his Disability EXAMPLE: (in 1987) • Lost 50 pounds in 3 months • Stopped talking & increased time in bed for 3 years • Changed eating and sleeping habits with noticeable reflux HEALTH CARE PROVIDERS: • Stated family is lucky James is still alive (born in 1962) • Indicated that it is good that he lost weight • Suggested family take James to see a psychiatrist ACTUAL DX=>undetected bleeding ulcer for 3 years EXAMPLE: (in 2012) • Hospitalized for increased heart rate (180 beats/minute) • Stage 6 Alzheimer’s HEALTH CARE PROVIDERS: • Asked James multiple questions with no opportunity for him to respond • Failed to recognize the capacity limitations related to his Alzheimer’s disease • Increased the volume of their voice as if he had a hearing loss • Indicated family would need to stay all day & night because of his agitated behavior &

tendency to get out of bed ACTUAL DX=>rare arrhythmia similar to mother’s requiring an ablation

Ask the individual . . .

Ask the family . . . Ask the provider . . .

What are you most worried

about regarding your

health/connection with

others/educational or work

plan?

What are you most worried

about regarding your

spouse/parent/sibling/child’s

health/connection with

others/educational or work

plan?

Should I be worried about

my/my son or daughter’s

health/connection with

others/educational or work

plan?

Tell me about your strengths. Tell me what he/she is good

at.

What strengths do you see in

me/my son/daughter that I

should capitalize on?

What have you been told

about your health/condition?

How does that fit with what

you know?

What is your understanding

of your _____’s

health/condition?

How do I describe my/my

son or daughter’s condition

and needs to others?

HOW: ASK THE RIGHT QUESTIONS

Ask the individual . . .

Ask the family . . . Ask the provider . . .

How would others describe

your condition & your ability

to communicate what you

need?

What things are hard for

your ________ to

communicate about his/her

condition and what he/she

needs?

Should I share my/my son or

daughter’s condition with

others and how do a address

their concerns?

What are your goals for your

health/connection with

others/ educational or work

plan? What are your hopes

for a quality life?

What are your goals for your

____’s health/connection

with others/educational or

work plan? What are your

hopes for his/her quality of

life?

What do you see as priority

goals my/my son or

daughter’s health/connection

with others/educational or

work plan?

ASK THE RIGHT QUESTIONS

Inspiring Connection and Leadership

The best and most beautiful things in the world cannot be seen or even touched - they must be

felt with the heart.

Helen Keller

http://wn.com/helen_keller__water_scene,from_the_miracle_worker

REFERENCES Akins, R.S., Angkustsiri, K. & Hansen, R.L. (2010). Complementary and alternative medicine in autism: An evidence-based approach to negotiating safe and efficacious interventions with families. Neurotherapeutics, 7(3), 307-319. Burgess, A. F., & Gutstein, S. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12 (2), 80-86. Hebert, E.B. & Koulouglioti, C. (2010). Parental beliefs about cause and course of their child’s autism and outcomes of their beliefs: A review of the literature. Issues in Comprehensive Pediatric Nursing, 33(3), 149-163. Hodgetts, S., Nicholas, D., & Zwaigenbaum, L. (2013). Home sweet home? Families’ experiences with aggression in children with ASD. FADD, 28 (3), 166-174. Irvin, D.W., McBee, M., Boyd, B.A., Hume, K., & Odom, S. L. (2012). Child and family factors associated with the use of services for preschoolers with autism spectrum disorder. Research in Autism Spectrum Disorders, 6, 565-572. Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with ASD. Journal of Applied Research in Intellectual Disabilities, 23, 390-397. Khanna, R., Madhavan, S.S., Smith, M.J., Patrick, J.H., Tworek, C. & Becker-Cottrill, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214-27. Kogan, M.D., Strickland, B. B., Blumberg, S. J., Singh, G., K., Perrin, J. M., & van Dyck, P.C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics, 122, e1149-e1158. Lovell, B., Moss, M., & Wetherell, M. A. (2012). With a little help from my friends: Psychological, endocrine and health corollaries of social support in parental caregivers of children with autism or ADHD. Research in Developmental Disabilities, 33, 682-687. Mackintosh, V.H., Goin-Kochel, R.P. & Myers, B.J. (2012). “What do you like/dislike about the treatments you’re currently using?”: A qualitative study of parents of children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 27(1), 51-60.

REFERENCES Miller, V.A., Schreck, K.A., Mulick, J.A., & Butter, E. (2012). Factors related to parents’ choices of treatments for their children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6, 87-95. Osborne, L.A., & Reed, P. (2009). The relationship between parenting stress and behavior problems in children with ASD. Exceptional Children, 76 (1), 54-73. Patten, E., Baranek, G. T., Watson, L.B., & Schultz, B. (2013). Child and family characteristics influencing intervention choices in autism spectrum disorders. FADD, 28 (3), 138-146. Peters-Scheffer, N., Didden, R., & Korzilius, H. (2012). Maternal stress predicted by characteristics of children with autism spectrum disorder and intellectual disability. Research in Autism Spectrum Disorders, 6, 696-706. Potvin, M. C., Prelock, P. A., Snider, L. (2008). Collaborating to support meaningful participation in recreational activities of children with ASD. Topics in Language Disorders, 28 (4), 365-374. Potvin, M.-C., Snider, L., Prelock, P.A., Kehayia, E., & Dauphinee, S. W. (2013). Patterns of recreational participation in high functioning autism. Journal of Autism & Developmental Disorders, 43 (2), 445-457. Potvin, M.C., Prelock, P.A., Snider, L., Beaudoin Savard, L. (in press). Promoting recreational engagement in children with autism spectrum disorders. In F. R. Volkmar (Ed.), Handbook of Autism & Pervasive Developmental Disorders, 4th edition. Rosenbaum, P., & Gorter, J.W. (2012). The ‘F-words’ in childhood disability: I swear this is how we should think. Child: Care, Health and Development, 38(4), 457-463. Sawyer, M.G., Bittman, M., LaGreca, A.M., Crettenden, A. D., Harchak, T.F., & Martin, J. (2010). Time demands of caring for children with autism: What are the implications for maternal mental health? JADD, 40, 620-628. Siman-Tov, A., & Kaniel, S. (2011). Stress and personal resource as predictors of the adjustment of parents to autistic children: A multivariate model. JADD, 41, 879-890. van Heijst, B.F.C., & Geurts, H.M. (2014). Quality of life in autism across the lifespan: A meta-analysis. Autism. DOI:10.1177/1362361313517053