Public Health Model of Intervention

10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Integrated Health and Wellness Approaches to Challenging Behavior in Persons with IDD

Joan B. Beasley, Ph.D. Jarrett Barnhill, MD Anne D. Hurley, Ph.D. Beth Marks, RN, Ph.D.

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Public Health Model of Intervention

• Primary: Capacity building; promoting wellness, improved quality of life; better outcomes

• Secondary: Expertise, access to appropriate care, cross systems communication; crisis prevention; accountability

• Tertiary: Expertise, appropriate response, stabilization, intervention; accountability

Numbers Benefitting from UniversityIntervention of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Primary Intervention: Improved access to services, treatment planning, integration of health and wellness, and development of service linkages

Effective Strategies ‘Changing the odds’ Secondary Intervention: Identification of individual/family stressors, crisis planning/prevention, health and medication monitoring and crisis intervention services Improved Supports ‘Beating the odds’

Tertiary Intervention: Emergency room services, Potential hospitalizations and law Required impact of enforcement intensity of intervention interventions intervention Accurate Response ‘Facing the odds’

1 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Medical and Genetic Conditions : Key Players for IDD and Mental Health Assessments

Anne Desnoyers Hurley, Ph.D. Research Associate Professor University of New Hampshire- Institute on Disability

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Initial Psychiatric Diagnostic Interview

General Population ID Population Establish relationship Relationship with a Team

Conversation, detailed Verbal ability limited questions & answers 3rd party information Evaluate overall presentation Atypical presentation Behavioral phenotypes

Discuss diagnosis and “Team” treatment treatment plan negotiation 5

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Chief Complaint N= 100 each Hurley et al. 2003 OPD

NIQ Mild M-P • Aggression* 6 45 37 • Mood* 38 9 3 • Anxiety* 24 8 1 • Suicidality* 14 6 0 • Physical* 5 6 18 • SIB * 0 2 9 • Cognitive* 2 5 11 • Psychotic 2 5 12 • Other 9 14 19

2 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED How Can We Improve Assessment? • Send for all medical and educational records • Integrating instrumentation into our assessment process • Assessment of adaptive skills and neuropsychological testing and projective testing • Specific tools to assess symptoms or areas, at initiation and regular follow-up • Careful integration of psychosocial stressors and medical conditions

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

START Formal Assessments

• ABC (Aberrant Behavior Checklist) • RSQ (Recent Stressors Questionnaire) • MEDS (Matson Evaluation of Medication Side Effects) • Obtain all medical and educational records • Case Conference Seminar for select individuals – CET Clinical Education Team

3 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

What do we Mean by Medical?

• Any condition that causes pain, illness, or impairments • Chronic illness • Disability – extra burden • Medical problems that are intermittent

• ALL OF THE ABOVE CAUSES PSYCHOLOGICAL DIFFICULITES

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED What about Genetics • Many people with intellectual disability have that condition because it is genetic in nature • Genetic conditions cause physical characteristics to be different, usually several • Many genetic conditions also are the cause of intellectual disability • Behavioral phenotype is that part of a genetic condition that influences intellectual ability and/or behavior and psychological / psychiatric functioning 11

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Why are Genetics Important?

• Because if we are trying to help someone who has a specific known genetic condition, we must find out as much as possible about how it may cause medical problems, what types of medical services the person may need, and we will understand psychiatric difficulties and/or challenging behavior associated with the condition better.

4 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Case #1

Down Syndrome

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Oscar 17 yo Down syndrome

• Referred due to severe physical aggression q 2-3 months, female staff or community members, incontinent, fecal smearing • 2006 psychiatric eval suggested he was manipulative • Axis I current: mental disorder due to medical problems; r/o autism spectrum disorder, r/o ODD

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Oscar 17 yo Down syndrome • ADHD –age 5 • Surgical procedure, complications, psychological reactions? • Hearing impairment • Vision severe nearsighted, legally blind • Psychiatric medications with no evidence of response- adverse events documented previously • Morbid obesity, hyperlipidemia, HTN, sleep apnea, hypothyroidism 15

5 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Oscar Age 17 Down syndrome • Prevacid- 30 mg, 1x/day • Perphenazine- 2 mg, 2 tabs 2x/day • Levothyroxine- 150 mg 1x/day • Clonidine- 0.1 mg in AM, 0.05 mg in PM, 0.1mg @ HS • Abilify- 5 mg @ HS • Clonazepam- 0.5 mg 1x/day @ HS • Allegra - 90mg (1/2 tab) @ HS • Melatonin 3 mg @ HS 16

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Types of Down Syndrome

• 95% of people with Down syndrome have trisomy 21– 3 copies of chromosome #21 • 4% have Robertsonian translocation because part of #21 attached to another chromosome, e.g., #14 • 1% have mosaicism because only some cells have 3 copies of #21: they may have milder features

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Epidemiology

• >60% spontaneously aborted • 20% stillborn • 1983: 9.5 in 10,000 live births • 2003: 11.8 in 10,000 live births

6 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Down Syndrome Phenotype • Short stature • Broad neck • Small hands • Epicanthal folds on eyes • Upslanting palpebral fissures • Flat nasal bridge • Small mouth • Brachicephaly

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Down Syndrome Behavioral Phenotype • Intellectual Disability mild-moderate • Extroverted, highly social • Impulsive, insistent • Ability in reading, math, daily living skills outstrips predictions based on IQ testing • More than 10% have Autism • “Ambitious”

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

• Scottish award-winning film & TV actress Paula Sage receives award with Brian Cox-- Wikipedia BAFTA Scotland 21

7 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Anxiety Disorders “Internalizers”

• Panic dx • Agorophobia • OCD • Obsessional slowness

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Active/Inattentive-Extroverted “Externalizers” • ADHD • May be linked to problems in expressive-receptive language frustration and perception of being “stubborn”

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Common Medical Problems

• Hearing impairment ✓ • Hypothyroidism ✓ • Visual limitations ✓ • Osteoarthritis • Fine & gross motor ✓ • Eczema • Congenital heart disease • Seizures ✓ • Obesity ✓ • Depression • Sleep apnea ✓ • • Anxiety disorders Diabetes • Alzheimer’s disease • Early aging • Constipation • Celiac disease • GERD✓

8 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

normal vision

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

severe nearsighted

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Changes • Training and understanding of visual and hearing challenges • Referral to visual specialists to consider adaptive equipment, ? Ipad and other devices which may help Oscar understand and communicate better • Focus on serious health problems, some linked to obesity, that might be addressed with more activity and dietary consultation with family and school • Address supports and ways to help him focus and be engaged rather than reinforcements and consequences • Address psychiatric medications re: effectiveness vs. side effects

9 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Resources

Guide for Parents of Teens and Young Adults with Down Syndrome Association of West Michigan 616- 956-3488 • 866-665-7451 (toll-free) http://www.kcdsg.org/files/content/Guide%20for%20Teens% 20and%20Adults%20with%20Down%20Syndrome.pdf

European Down Syndrome Association Health Care Guidelines for People with Down Syndrome http://www.edsa.eu/files/essentials/edsa_essentials_2_healt hcare.pdf

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Case #2

F-G syndrome Opitz–Kaveggia syndrome

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED George 30’s Mild ID

• Lives in 24-hr staffed apartment, gets upset easily, bangs on walls, pulls staff into debate with no end • Speaks well, but often too quickly • Can be “manipulative” • Had 3 psychiatric hospitalizations, talks about spirits that calm him • Short attention span, obsessive compulsive behaviors that must be repeated

10 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Strengths - Challenges

• Can speak well verbally • Has interests such as sports, fishing, shopping, wrestling • Likes to dress as a “gangster” • Trouble with constipation, bedwetting, complains of heartburn • Still upset about girlfriend who died 4 years ago • Has 2 part time jobs

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

ABC Area Scores Total possible Service Team

Irritability 45 18

Lethargy 48 0

Stereotypy 21 9

Hyperactivity 48 26

Inappropriate Speech 12 2

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Current Psychiatric Diagnoses

• Current diagnosis in file • Axis I: Bipolar Disorder, Dysthymia, Attention Deficit Hyperactivity Disorder, Posttraumatic Stress Disorder • Axis II:ID Mild • Axis III: FG Syndrome – Agensis of Corpus Collosum ,constipation, bedwetting, heartburn • Axis IV: Problems related to the social environment – Problem with support group • Axis V: deferred

11 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

• Ranitidine HCL 1 50mg BID, GERD • Colace/Doc-Q-Lace 100mg Daily constipation • Ditropan XL/ 10mg QHS incontinence • Levothyroxine sodium 50mcg Daily hypothyroid • Lamictal/Lamotrigine 300mg QHS • Risperdal/risperidone 1mg BID • Risperdal/risperidone 1 mg Q 24 PRN agitation • Risperdal 3mg HS • Propanolol HCL 10mg TID • Tenex/Guanfacine 1mg TID ry • Simethicone 125mg Q 8 hr PRN bloating

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Genetics Home Reference page Rare Diseases Information NIH

• 5 regions of the X chromosome are involved • The condition is called FGS1 when it is caused by a change (mutation) in a gene MED12 • FGS2 is caused by mutations in the FLNA gene. The genes responsible for FGS3, FGS4, and FGS5 remain unknown. FGS is inherited in an X- linked recessive pattern

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

autosomal recessive inheritance wikipedia 36

12 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

FG Syndrome- Physical Problems

• Feature of facial configuration • Macrocephaly • Undescended testicles • Broad thumbs and large great toes • Cardiac defects • Low muscle tone or hypotonia • Intestinal and anal abnormalities and severe constipation • Often die in infancy • Inguinal hernia • Reflux • Limb defects

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED FG Syndrome - Behavioral Phenotype- Neurological Problems

Intellectual disability, mild to severe Outgoing personality Extreme hyperactivity Abnormalities in corpus collosom Seizure disorder Low muscle tone – hypotonia Self-absorption and fascinations with mechanical toys and objects, Autism Spectrum Disorder Demanding of attention Becomes “unglued” by little changes 38

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

• Kim Peek (1951-2009) was a “savant” of exceptional ability • Exceptional memory (could memorize an entire book at an early age) and social difficulties • He had agenesis of the corpus collosom and FG syndrome • Screen writer for Rain Man met him • http://www.youtube.com/watch?v=k2T45r5G3kA Kim Peek video

13 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Kim Peek basis of Rain Man wikipedia 40

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Changes • GI specialist re: underlying conditions contributing to his problems in this area + other medical recommendations • Discuss reducing d/c risperidone • Provide more consistency in choices & activities • Staff to be coached in dealing with “arguments” and rigid thinking • Alter expectations re: his independence • Counseling re: loss and past difficulties

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Final Points • All people that we help are not able to speak for/ or advocate for themselves as well as typical people • Not only are their wishes and dreams often inaccessible, they are unable to relate information and symptoms in psychiatric settings and also in medical settings

14 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Final Points

• Often medical problems are a source of “challenging behavior” and/or “psychiatric problems” • Behavioral phenotypes explain many difficulties and must be considered

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Final Points • A thorough medical evaluation must be initiated for people with ID and challenging behavior and/or psychiatric symptoms

• We must help everyone to see the individuals we help through a personal understanding of their lives… how would it be if I were born legally blind? How do we help someone who is neurologically different in a way that causes him to be just as he is and accept his inability to be as we wish? 44

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Resilience: A Complex Neurodevelopmental Phenomenon

Jarrett Barnhill MD, DLFAPA, FAACAP, NADD-CC University of North Carolina Chapel Hill, NC Medical Director, National Center fore START Services UNH/IOD

15 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Goals

• Basic differences between risk/vulnerability/predisposed and resilience • Concept of developmental windows for vulnerability, resilience and emerging cognitive, emotional and practical skills • Complex traits have complex genetics, understanding of gene-environment interactions - an ecological model • What can we do about building resilience - treat v. state

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

What is Resilience?

• A dynamic process that contributes to a positive adaptation to significant adversity • Why don’t monozygotic twins have a 100% concordance for psychiatric disorders - shared/non-shared environments, long-term v. short-term differences; probabilistic not deterministic • A fluid-dynamic process, nodal points in the risk/predisposing- protective/perpetuating processes • Begins in infancy - synchrony, attunement, attachment, movement towards autonomy • How does ID affect to this developmental trajectory

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Many Faces of Resilience

• Immunity to many disease states - HIV/AIDS resistant noted with Chemokine-5 receptor prevents the virus from entering the cell • Dementia - APOE e2/4 ratio; cognitive reserve; exercise, dietary health - relationship to aging (Trisomy 21) • Trauma and Stress Related disorders - early parenting/attachment/temperament; relationship to gene X environment interaction; capacity to elicit protective responses from others; early intervention - 10-15% develop PTSD • Individuals with genetic risks for severe mental disorders but who never develop the syndrome • Intellectual Disabilities - cognitive, emotional, practical skills v. deficits

16 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Complex Developmental Trajectory of Resilience

• Trajectory of vulnerability/mastery development - phase specific stressors challenged and help organize adaptive skills • The evolution of parent-infant attachment, synchrony, reciprocity and temperament play key roles in the organization of CNS, stress response systems and development of late emerging executive and fluid intelligence • Relationship to neuroplasticity, critical periods, turning points • Events that disrupt this trajectory can be biological, psychological, and social but need to be specified - if we do not adapt our thinking to integrate new information the bio-psychosocial model can become a cliché

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Resilience as a Complex Behavioral Trait

• Brain development - top down regulation of perception, emotion, language, memory and executive function • Polygenic/ pleiotropic - complex gene environment interactions • Brain as an organ of social adaptability developing in a social context - stress response system, neuroendocrine regulation • Temperament: beh. inhibition, extroversion/introversion, novelty • Attachment - secure, ambivalent, disorganized/avoidant

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Social-Cultural Issues

• Ecological model - developmental changes in levels of socialization, expectations, expansion of basic attachment to social and cultural factors • Synchrony, oxytocin/vasopressin and belonging • Access to material resources; relationships, identity, cohesion, power and control, cultural adherence, social justice • Level of environmental “enrichment” • Impact of changing demands, culture change and loss of effective rituals

17 10/27/2014

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

What Can We Do - Enhancing Resilience?

• Design program in ecological and developmental contexts • Identify most at risk children and intervene early, safety needs • Adapt programs to developmental age, temperamental matching the changing trajectory of attachment needs • Adapt therapy to pulsed interventions that concentrate of maximizing critical periods • Shift from a pathology focus to an adaptive one - flexibility of programs • Modification of the developmental process, alter gene effects

University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED

Reference:

Carrey N Ungar M (Eds). Resilience. Child and Adolescent Psychiatric Clinics of North America, 2007, Philadelphia: Elsevier Saunders. 16(2).

[email protected]

NADD Pre-conference HealthMatters Program: Turning Evidence into

Integrated Health Sustainable Practice for People with and Wellness Developmental Disabilities Approaches to Challenging Behavior in Persons with IDD Beth Marks, PhD, RN

San Antonio, Texas November 12, 2014 54

18 10/27/2014

Getting the Memo

. Real People – Health promotion for people with intellectual and developmental disabilities (I/DD) and psychiatric disabilities

. Practical Solutions – Evidence based practice for community services

. Real Changes – Support for long-term lifestyle changes

Did you know that 36% of all American adults are obese? • People with I/DD are more overweight and obese compared to the general population. • Paid caregivers experience stress and burnout • poor health • emotional problems • unhealthy lifestyles • poor quality of life

Mental Health, Morbidity & Mortality

 CVD, acute & chronic pulmonary disease, accidents, suicide, cancer, diabetes, liver disease, and septicemia  Smoking, obesity, & sedentary lifestyles  Die on average between 13.5 and 32.2 years earlier than general population  Biological pathways & chronic stress with mental illness  increased pituitary activity, cortisone levels, & proinflammatory factors  strokes and heart attacks, and abnormalities of the autonomic nervous system that might lead to more heart disease and sudden death issues.

1. Medical evaluation of psychiatric patients. Results in a state mental health system.Arch Gen Psychiatry1989; 46:733–740. 57 2. Wayne Katon, MD, Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine

19 10/27/2014

Main Causes of Obesity

• Medications that cause weight gain • Less physical activity • Genetics – lower muscle tone • Environment – having the opportunity to eat and move o Controlling food choices o Choosing activity or exercise

58 Handout 2: Genetics, Lifestyle and Obesity

Primary Care is Reactive

 Difficult for people who are reluctant, or unable, to seek help  Short consultation times  Physical exams are difficult for people who may be vague or suspicious  Emphasis often on psychological and social issues if mental health providers are present  Preventive and promotive health services often absent

1. Medical evaluation of psychiatric patients. Results in a state mental health system.Arch Gen Psychiatry1989; 46:733–740. 59 2. Wayne Katon, MD, Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine

It’s Everyone’s Job

Lifelong culture of interdependency

Expectations and the tyranny of none

Power to impact health status and determine health practices

20 10/27/2014

Community Engagement Matters

• Developing and implementing evidence-based community-based health promotion programs. • Sustaining evidence- based programs across community sectors. • Parity in health status and equity in health care services for people with I/DD.

Where People Live Matters

Total Cardiovascular Disease Deaths, 2005/100,000 population

62 9 American Heart Association and American Stroke Association. (2009). Cardiovascular Diseases in the United States: 2009, retrieved from www.americanheart.org/downloadable/heart/1238516653013CVD_Stats_09_final%20single%20pages%20%282%29.pdf

Health Promotion

• Enable people to take control over and to improve their health.

• Build capacity within CBOs and communities: Access to affordable and available health care. Acceptable culturally relevant and satisfactory health care. 63

21 10/27/2014

Disability and Health Status

While a large proportion of persons who are in bad health end up with a disability,

a large number of people with disabilities end up

with bad health. 65

Knowledge Lost in Translation

• Information gap oSlow or no reach to people receiving services oGood questions are asked – but not reaching academia. • Gaps for groups: owomen oracial/ethnic minorities oother high-risk groups in the US healthcare system – people with disabilities

Lenfant C. Clinical Research to Clinical Practice - Lost in Translation? N Engl J Med 2003;349:868-74.

Dispelling Myths… ...…Changing Attitudes

Myths Facts

 People with I/DD  People with I/DD see are sick. themselves as healthy.  Chronic conditions (e.g.,  Chronic conditions are lifestyle obesity, hypertension, related (e.g., sedentary, poor diabetes) are diets, disability related. lack of opportunity).  Lifestyle habits are impossible to change.  Health promotion strategies work!

22 10/27/2014

Determining Health Needs and Interests

• Biological factors – syndrome and gender- related conditions • Behavioral practices • Access to health care services and programs – Physical, attitudinal, programmatic, and communication/literacy • Socio-economic and environmental issues

Beyond Personal Health Practices

• Sustainable health promotion programs o “Point of View” for Health o Behaviors most often influenced by broader socio-environmental and economic factors o “Where the people are…” • Community Coalitions o Social capital – sense of trust and long-term reciprocity

Health and Equity

Translating Evidence-Based Health Promotion Research to Practice

There has been a lack of bi-directionality (sort of) because your research is yours (rightly so) and our comments may be helpful to you or not, but may not have significant influence on your process in the end.

~ Leslie Hoelzel, ARCA

23 10/27/2014

Community Partnerships: “Won’t- Take-Failure-for-an-answer”

1.Community ignored

2.Community placed

3.Community informed

4.Community as partners 70

 Currently 641,000 adults age 60 and older.

 Projected increase of 90% to 1.2 million age 60+ by 2030.

 Individuals with I/DD who have lived 30-50 years with a disability are experiencing new health concerns.

CVD and People with I/DD

Cardiovascular disease (CVD) is one of the most common causes of death.

 Adults living in community settings have the highest CVD risk of all adults with I/DD.

 CVD is strongly associated with health behaviors – specifically poor nutrition and lack of physical activity. 72

24 10/27/2014

Copyright ©2014 HealthMattersProgram.org National Core Indicators (NCI) What is it? • The National Core Indicators (NCI) o Started in 1997 o Collaborative effort between the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI). • The goal: Standard set of performance measures . States to manage quality and . Across States for making comparisons and setting benchmarks. • Today 41 states are participating

73 www.nationalcoreindicators.org/states/

NCI Wellness Indicators

NCI State Report: Kentucky 2012-2013

74 www.nationalcoreindicators.org/states/

Practical Solutions-Research to Practice

Handout: HealthMatters Program Research to Practice

25 10/27/2014

Adults with I/DD Adults with I/DD

 exercise attitudes  perceived health behaviors  exercise self-efficacy  exercise self-efficacy  exercise outcome expectations  nutrition/activity knowledge  life satisfaction  cholesterol & glucose  cardiovascular fitness, strength and  fitness (flexibility) endurance  exercise & nutrition socio-  cognitive–emotional barriers environmental supports

Heller, et al., (2004); Rimmer, et al., (2004) Marks, Sisirak, Chang (2013)

Example Goal Increase the overall percentage of recipients who engage in moderate physical activity for 30 minutes a day at least three times per week by at least 5%.

Strategies to Meet Goal * Structured activities within day services (12-week HealthMatters Program) * Partnership with community recreation centers * Targeted health education programs

• Theoretically-driven Workshop • Strategies to teach exercise and nutrition classes and motivate people to achieve wellness goals • Tools to evaluate changes in health

CEUs are provided for Advance Practice Nurses, Registered Nurses, Licensed Practical Nurses, Social Workers (LCSW, LSW, LPC, LCPC), Nursing Home Administrators, Speech Language Pathologists, Physical Therapists, Occupational Therapists, Recreational Handout:Therapists, Workshop and Qualified Brochure ID Professionals (QIDP). 78

26 10/27/2014

 Evidenced-Based Curriculum for adults with I/DD  36 interactive modules with 23 additional lifelong learning modules

 Understand attitudes toward health, exercise & nutrition.

 Identify current behaviors.

 Develop clear exercise and nutrition goals and stick to them.

 Gain skills and knowledge about exercising & eating nutritious foods.

 Support each other during class

Marks, Sisirak, & Heller (2010). Health Matters: The Exercise, Nutrition, and Health Education Curriculum for People With Developmental Disabilities , Brooks Publishing., p. xii 79

 Great progress with health promotion and disease prevention in the general population.

 Implement health promotion programs on a larger scale for people with disabilities.

 Provide sustainable evidence-based health promotion programs as a standard of care.

Real Changes - Matters of Support

 Individuals with I/DD (Intrapersonal)

 Social Support (Interpersonal)  Caregiver support  Peer support

 Supportive Environments (Organization, Community, Policy)

81 Socio-Ecological Theory Source: Golden, S. and Earp, J. (2012), Social ecological approaches to individuals and their contexts: twenty years of health education and behavior health promotion interventions.

27 10/27/2014

Organizational Culture…  Supports health & well-being of people with I/DD and caregivers  Links employee wellness programs to organizational outcomes  absenteeism  turnover  health care costs  workers compensation claims  Healthier workforce linked to higher job satisfaction and performance.

Strategically Balanced Approach Culture Confidence

Knowledge

Resources

1. Resources: Employees have resources to promote health among adults with I/DD 2. Culture: Leaders, managers and staff enable and support health promotion practice and values are practiced.  Commitment – Employees believe in and advocate for health promotion  Policy – Vision, mission, and policies align to support health promotion

3. Confidence: Employees are able to implement health promotion activities 4. Knowledge: Employees understand fundamental principals and strategies of health promotion

28 10/27/2014

Signs&Symptoms Program: Early Recognition of Health Problems

 Increase continuity of care within day/residential CBOs.

 Instruct caregivers to observe early signs and symptoms of new or changing health concerns among people with I/DD.

HealthAdvocacy for Providers, Families, and People with I/DD  Increase understanding of health care experiences and needs among adolescents and adults with I/DD

 Improve culturally relevant care

Peer to Peer HealthMessages Program

 Teach people with I/DD to become Healthy Lifestyle Coaches (HLCs)  Mentors support HLCs to implement a 12-week HealthMessages Program for peers.  12 week program

29 10/27/2014

HealthMatters 4Kids: Today Counts

Diabetes Prevention Workshop  Introduces health promotion and health advocacy for children and adolescents with I/DD  Developed by Northpointe Resources in collaboration with HealthMatters Program at UIC.

Audience Parents/Caregivers, Educators, and Healthcare Providers who support children with I/DD.

Scaling-Up Evidence-Based Programs • Facilitate buy-in, fiscal accountability, and policy support from stakeholders

• Understand facilitators and barriers for scale-up

• Achieve widespread translation in CBOs for reach, effectiveness, adoption, implementation and maintenance of program

8989

HealthMatters: Scale-Up Research Project

 A 5year research study evaluating the usefulness of an interactive webinar (Health Matters Program: Train the Trainer online course).  Aimed at staff working in community- based organizations providing services to people I/DD.

30 10/27/2014

This study will help us learn how we can best deliver webinar training to give staff in community-based organizations the necessary skills to:

 Assist individuals with I/DD to develop their health promotion goal.  Develop and teach a physical activity, nutrition, and health education program for individuals with I/DD to reach their health promotion goal.  Support individuals with I/DD to make long-term lifestyle changes

Contact

Beth Marks 312-413-4097 [email protected] www.HealthMattersProgram.org