Welcome to ALTSA/DOH webinar “Making CDSME More Welcoming to People with Developmental and

Intellectual Disabilities” Wednesday, December 11, 2013

11 am- Noon

Presenters Angela Weaver, Oregon Office on

Disability & HealthDonna Lowary, People First of

Washington Dave Hughes, Healthy Communities

Foundation Nancy Ludwick & Ronaele Fitzpatrick,

Comprehensive Health Association of Spokane ( CHAS)

Disabilities & Health Disparities

People with disabilities are more likely to experience: Poor health Secondary conditions Early death

But this doesn’t mean that PWD: Are sick or ill Cannot be healthy

It is not necessarily the disability itself that causes the health disparities but environmental and social factors.

Behavioral Risk Factor SurveillanceSystem

• Population-based telephone survey of adults (18 & up) conducted at state level

• Demographics, health status, chronic conditions, health behaviors, health risks

• Limitations: people living in congregated environments are not included (prisons, assistive living programs, nursing homes, etc.)

Sample Disability Statistics—2011 BRFSS

Source: Oregon Office on Disability & Health

Health of People with Cognitive Limitations

• The BRFSS is not a good source of data for people with intellectual disabilities or other types of cognitive limitations

• National data are available from the Medical Expenditure Panel Survey for people with cognitive limitations generally

• Other research has focused specifically on people with intellectual disabilities

Medical spending per year by type of disability

• Much of this cost resulted from preventable conditions that required additional outpatient and hospital care.

Source: Reichard, et. al 2010, Ways to Improve…

Overview of Chronic Conditions

Source: Reichard & Hodgesmith (2011)

BMI Comparison

Source: Reichard & Hodgesmith (2011)

Specific Chronic Conditions: Diabetes

Diabetes PrevalencePercent of Medicaid-supported Diabetic People with Cognitive Disabilities Who Did Not Receive Quality

of Care Screenings in the Last Year

Source: Reichard, et. al. (2010). Comparing…

Health of People with Intellectual Disabilities

• Draheim (2006) analyzed several studies looking at the relationship of cardiovascular disease (CVD) and CVD risk factors among people with intellectual disability (ID)

• Generally found higher risk factors for CVD in adults with ID– Low physical activity

– High dietary fat intake

– Obesity

– Hypertension

Source: Draheim (2006)

Health of People with Intellectual Disabilities

• Studies of people with Down Syndrome specifically have found:– High LDL (bad) cholesterol– Low HDL (good) cholesterol– Elevated fasting insulin– Abdominal obesity

• People with ID living in community settings have more CVD risk factors than those in institutions

Source: Draheim (2006)

References

• Draheim, C. C. (2006). Cardiovascular disease prevalence and risk factors of persons with mental retardation. Mental Retardation and Developmental Disabilities Research Reviews, 12, 3-12.

• Oregon Office on Disability and Health (OODH). (2013). Disability in Oregon: 2013 Annual Report on the Health of Oregonians with disabilities. Portland, OR: Oregon Office on Disability and Health, Institute on Development and Disability, Oregon Health & Science University.

• Reichard, A., & Hodgesmith, M. (2011). The intersection of disability and chronic disease. Lawrence, KS: Research and Training Center on Independent Living, University of Kansas.

• Reichard, A., Hodgesmith, M., & Stolzle, H. (2010). Comparing diabetes rates among adults with cognitive limitations to adults with no disabilities in the U.S. Lawrence, KS: Research and Training Center on Independent Living, University of Kansas.

• Reichard, A., Hodgesmith, M., & Stolzle, H. (2010). Ways to improve health and reduce costs for adults with physical disabilities or cognitive limitations. (No. R-2). Lawrence, KS: Research and Training Center on Independent Living, University of Kansas.

Questions and Thank You!

Angela Weaver, M.Ed.

Oregon Office on Disability and Health

(503) 494-1205 weaverro@ohsu.edu

www.oodh.org

Donna Lowary, Executive Director

People First of Washington

Exploring the positive ways of including people with

developmental/intellectual disabilities in your Chronic Disease Self Management

Programs

People First Language

Did you know that people with disabilities constitute our nation’s largest minority group (0ne in five Americans has a disability)? It’s also the most inclusive and most diverse group; all ages, genders, religions, ethnicities, sexual orientations, and socioeconomic levels are represented.

Contrary to conventional wisdom, individuals with

disabilities are not:• People who suffer from the tragedy of birth

defects.• Paraplegic heroes who struggle to become

normal again.• Victims who fight to overcome their

challenges.

Nor are they the retarded, autistic, blind, deaf, learning disabled, etc.-- ad nauseam!

They are PEOPLE:

• Moms and dads

• Sons and daughters

• Employees and employers

• Friends and neighbors

• Students and teachers

• Scientists, reporters, doctors, actors, presidents, and more.

People with disabilities are people, FIRST.

The difference between the right

word and the almost right word

Is the difference between

lightning and the

lightening bug.

-Mark Twain

Where do we go to recruit participants with I/DD?

• Governmental Agencies that serve people with I/DD: These maybe groups that are funded by the Administration on Intellectual and Developmental Disabilities-each state has a Developmental Disability Council, National Network of University Centers for Excellence in Developmental Disabilities Education, Research & Service, and Protection and Advocacy.

These groups can be a great place to gain resource information on groups that do direct services with people with I/DD. They are also to have a certain % of their membership composed of parents of or people with intellectual/developmental disabilities.

State government program based Organizations And

Agencies:

• Centers for Independent Living

• Developmental Disabilities Administration

Residential providers, employment vendors

• Department of Vocational Rehabilitation

Grassroots organizations in your state that have personal

connections.• Groups that primary purpose is to do direct

interactions with people with I/DD:– Self-Advocacy groups such as People First, Self Advocates in

Leadership, Autistic Self Advocacy Network, Traumatic Brain Injury Network, etc.

– Arc groups that support parents with children with I/DD– Father’s Network– Special Olympics

Dave Hughes

Healthy Communities Foundation

Market FocusRegistration

WelcomeFacility

PROCESS FLEXIBILITY

Location Check ListScheduling:Location: Size of room: Shoot for 20Preferred days/times

TransportationAccessible parking

Van-accessibleStandard-size accessible

Bus access: location of closest stopParatransit: Note - participants arriving/departing

via paratransit may arrive early and/or need to stay late in relation to your event.

Location Check ListChildcareAvailable on site? Is financial assistance available?Breastfeeding: private room available?Restroom with changing table available? Interpreter:Sign language interpreterAlternative FormatsLarge Print BrailleElectronic format Assistance with readingAssistance with writing

Location Check ListAlternative SeatingSpecialized chair (to reduce pain)Close to presenterClose to doorSpace to move around during meetingHas mobility needsMobility needs / uses:Uses crutchesUses walkerUses manual wheelchairUses power wheelchairUses service animal

________________________________________________

Location Check ListPreferred Method of ContactPhoneEmailTextDietary NeedsEnvironmental AllergiesNeed fragrance-free room/participantsNeed smoke-free room/participantsAllergy to dogsOther

Pick Logical Venues•Market•Location

Cover Shortcomings•Welcome Letter•Class orientation

Be Aware

TAKE AWAYS

Nancy Ludwick

Master Trainer with Comprehensive Health Association of Spokane

(CHAS)

Ronaele Fitzpatrick, CDSMP Lay Leader

Comprehensive Health Association of Spokane

(CHAS) Clinic

I have led several workshops with participants living with developmental disabilities.

They included people that had many other kinds of chronic

conditions .

INCLUSION

Some of the conditions one group was coping with.

• Traumatic brain injury

• Alzheimer’s• Stroke• Seizures

• Diabetes• Emphysema• Arthritis• Parkinson's

Group Communication

• This workshop worked best when people were at tables of 3 or 4 people

• We helped everyone understand the process better by asking volunteers at the tables if they would model the activity with us.

• We worked with people at each table making sure anyone having difficulty could understand and participate in the activity.

Group Dynamics

• Soon the people with a better grasp of the activity were helping the people who had a difficult time.

• I saw 2 major changes in the whole groupAll participants became more confidentThe pride in helping one another was evident in

the smiles and encouragement they gave each other.

My conclusion

• I believe we all benefit by including people with all kinds of chronic conditions.

• People feel they have value when they help others.

• People feel they have value when they are helped by others.

• This group worked together with respect and understanding. The entire group of 16 graduated !!

Questions