Embed Size (px)
Citation preview
Continuing the Call
Rosaly Correa-de-Araujo, MD, MSc, PhD
Deputy Director, Office on Disability
Health Frontier for Intellectual Disabilities
Bethesda, MD, May 23-26, 2011
Surgeon General Report
2002 Closing the Gap: A National
Blueprint to Improve the Health of
Persons with Mental Retardation
“Reports don’t have arms and legs. Like
many others, this report will just sit on
shelves unless we turn it into action….. I
ask everyone reading this report to do
your part to achieve our noble objective
of improving the health of all persons
with mental retardation.”
2002 Closing the Gap: A National
Blueprint to Improve the Health of
Persons with Mental Retardation
Goals
Health promotion and community
environments
Knowledge and understanding
Quality of health care
Training of health care providers
Health care financing
Sources of health care
The 2005 Surgeon General’s Call to
Action to Improve the Health and
Wellness of Persons with Disabilities
“This call to action encourages health
care providers to see and treat the
whole person, not just the disability;
educators to teach about disability; a
public to see and individual’s abilities,
not just his or her disability; and a
community to ensure accessible health
care and wellness services for persons
with disabilities.”
2005 The Surgeon general’s Call to
Action to Improve the Health and
Wellness of Persons with Disabilities
GOAL 1 - People nationwide
understands that persons with
disabilities can lead long, healthy,
productive lives
GOAL 2 - Health care providers have
the knowledge and tools to screen,
diagnose, and treat the whole person
with a disability with dignity
2005 The Surgeon general’s Call to
Action to Improve the Health and
Wellness of Persons with Disabilities
GOAL 3 - Persons with disabilities can
promote their own good health by
developing and maintaining healthy
lifestyles.
GOAL 4 – accessible health care and
support services promote independence
for persons with disabilities.
2002 Report
Goals
Health promotion and
community environments
Knowledge and
understanding
Quality of health care
Training of health care
providers
Health care financing
Sources of health care
2005 Call to Action
Goals
Goal 1
Full integration,
opportunities
Goal 2
Knowledge and
understanding
Goal 3
Promoting their own
health
Goal 4
Accessible care,
independence
RESPONDING TO THE CALLS
Research at NIH-NICHD
NICHD – Selected Supported
Intellectual and Developmental
Disabilities Research
Range of NICHD-supported IDD research:
Epigenetic modifiers in Down Syndrome
Molecular cloning of the Fragile X site
Brain and tissue bank for developmental
disorders
Optimizing social and communication outcomes
for toddlers with autism
Developing and maintaining physical fitness in
adolescents with Down Syndrome
Aging in adults with Down Syndrome
NICHD – Intellectual and Developmental
Disabilities Branch Selected Activities
Eunice Kennedy Shriver IDD Research Centers
–IDDRCs
Program on Fragile X Syndrome and
associated disorders
Rare disease cooperative research consortia –
RDCRCs
Senator Paul D. Wellstone Muscular Dystrophy
Cooperative Research Centers
Chromosome abnormalities, genetic/genomic
syndromes, and epigenetic disorders
NICHD – Intellectual and Developmental
Disabilities Branch Selected Activities
Biochemical and metabolic research
Research on autism spectrum disorders
The Hunter Kelly Newborn Screening
research Program
Research resources
Branch-supported training initiatives
NICHD – Intellectual and Developmental
Disabilities Branch Selected FOAs
Preclinical research on model organisms to
predict treatment outcomes for disorders
associated with intellectual and developmental
disabilities – R01 PAR-11-038
Outcome measures for use in treatment trials
for individuals with intellectual and
developmental disabilities - PAR-11-045
Understanding and treating co-morbid
conditions in adolescents with intellectual and
developmental disabilities – PAR-11-039
NICHD – Intellectual and Developmental
Disabilities Branch: Committees, Plans
NIH Research Plan on Down Syndrome
http://www.nichd.nih.gov/news/resources/spotlight/0
12208_research_plan_down_syndrome.cfm.
2011 Strategic Plan for Autism Spectrum
Disorder Research
http://iacc.hhs.gov/news/news_updates/2011/news_
2011_plan.shtml and http://iacc.hhs.gov/
• The NIH research Plan on FXS and Associated
Disorders
http://www.nichd.nih.gov/publications/pubs_det
ails.cfm?from=&pubs_id=5729
NICHD – Intellectual and Developmental
Disabilities Branch: Conferences
2010 The Down Syndrome National
Conference on Patient Registries, research
Databases, and Biobanks
2010 Newborn Screening in the Genomic
Era: Setting a Research Agenda
RESPONDING TO THE CALLS
Services at ACF-ADD
ACF ADD Activities
Intellectual/Developmental Disabilities
State Councils on Developmental
Disabilities – SCDD
Protection and Advocacy - P&A
University Centers of Excellence in
Developmental Disabilities – UCEDD
Projects of National Significance – PNS
Help America Vote Act (P.L. 107-252)
HAVA
ACF Project Search Initiative
RESPONDING TO THE CALLS
Data at CDC -NCBDDD
CDC NCBDDD
Activities Supporting
Intellectual/Developmental Disabilities
Metropolitan Atlanta Developmental
Disabilities Surveillance – MADDSP
Autism and Developmental Disabilities
Monitoring – ADDM – Network
Metropolitan Atlanta Developmental
Disabilities Study – MADDS – Follow-up
Study of Young Adults
RESPONDING TO THE CALLS
Disparities at HRSA
Shortage Designations and
People with Disabilities
HRSA – Negotiated Rule-Making
Committee
Strong advocate
Various conditions under the umbrella of
disabilities for MUP
People with disability will likely apply to
MUP designation – streamlined process
Health professions shortage area facility
designation – magnet facility
OCTOBER 2011
RESPONDING TO THE CALLS
Curriculum Development at
HHS-OS/OD
Why Developing a
Disability Curriculum?
54 million with some form of disability
Tools and knowledge to promote
wellness
Secondary conditions prevented or
treated successfully to improve
outcomes
Integrated, culturally sensitive and
respectful health care services – whole
person
Why Developing a Disability
Curriculum (cont’d)?
Advances in technology, diagnostics
and treatment - longer infant survival,
survival into adulthood and old age
Multiple comorbidities, particularly in
older adults will likely increase disability
rates worldwide
Military-related disabilities
Areas of Core Knowledge &
Competence on Disability
Conceptual framework: human diversity,
illness, lifespan, social/cultural environments
Skills to asses disability, illness functional
consequence, physical environment
General principles and management skills
Skills to identify pertinent health and health
care info and resources
Understanding of quality of life
ADA - legal requirements
2008 Recommendations
Office on Disability
National Medical Curricular Initiative in
Developmental Medicine
Mountain Area Health Education Center
American Academy of Developmental
Medicine & Dentistry
Focus
Residency training
Intellectual/developmental disability
Adults OUTSTANDING JOB IN
CONTINUING THE SURGEON
GENERAL CALLs
Moving Ahead with
Curriculum Development
The time is right! Health Reform
Opportunities
Pilot Implementation project, publish
results, replicate model, partnership for
quality
Get the buy in from AMA, other
professional organizations and associations
Develop training modules, make modules
available online, illustrate with case studies
Offer CME credits
Opportunities Under
Affordable Care Act of 2010
Establishes people with disability as a population
experiencing health disparities
Directs disability data to be collected, analyzed and
reported to detect and monitor health disparities
Directs disability data to be collected in clinical and
public health programs
Directs disability data to be collected to assess the
accessibility of health care facilities and equipment
Directs data to be collected regarding training of health
care providers in awareness of disability and care
of people with disabilities
Summary of Provisions in ACA and
Disability
Section 4302 concerned with data collection,
analysis and quality related to understanding of
health disparities.
Provisions affect data collection, analysis and
reporting in HHS and also specifically the
Current Population Survey (Bureau of Labor
Statistics in Dept. Labor) and the American
Community Survey (Bureau of Census in Dept.
of Commerce).
Applies to “any federally conducted or supported
health care or public health program, activity or
survey. “
Affordable Care Act – Key Provisions
for Public Health and Data Collection
Affordable Care Act – Key Provisions
for Public Health and Data Collection
Within 2 years of passage, data to be collected and
reported for “applicants, recipients, or participants”
on five demographic variables (to the extent
practicable):
• Race
• Ethnicity
• Sex
• Primary language
• Disability status
The purpose is to “detect and monitor trends in
health disparities”
Affordable Care Act – Key Provisions
for Public Health and Data Collection
Smallest geographic level such as State, local, or
institutional levels if such data can be aggregated;
Directs collection of “sufficient data to generate
statistically reliable estimates (for these groups)
using, if needed, statistical oversamples . . . “
Use OMB standards for race and ethnicity; “develop
standards for measurement of sex, primary
language and disability status.”
Current Status
Data Collection, Analysis, and Quality
1. Evidence-based, worked well in
practice for national survey data
collection.
2. Minimum data standard.
3. Standards already mandated by the
OMB - basis for any minimum standard.
4. Standards recommended are
intended for person-level data
collection. ACS
Section 4302
Survey Questions
Survey providers to assess access to
care and treatment
Locations where people with disabilities
access primary, acute, long-term care
Providers with accessible facilities
Number of employees trained in
disability awareness and patient care
Current Status
Survey Q uestions
Ongoing development and analysis of
questions against existent surveys
Discussion on recommendations for the
Secretary
Changes To Expect in Disability Data
Initial decrease in estimated prevalence of
disability in many surveys;
Increase in the routine reporting of health
outcomes, behaviors , etc. by disability status;
Inclusion of disability status in multivariate
analyses as an independent variable;
Routine inclusion of disability in public health
programs.
Improved data collection will allow us
the opportunity to better identify gaps.
Data gaps will support the development
of quality improvement interventions to
meet the needs of this population.
Data on health outcomes, social
participation and quality of life are
critical to monitor progress.
Data may also serve to determine best
practices, pending careful interpretation
of findings.
We must overcome some of the current
methodological challenges and ensure
we include adults with intellectual and
developmental disabilities
We must expand surveillance on an
ongoing basis around the country.
We must take advantage of existent
surveys to expand and improve them.
Your Curriculum Development
Initiative Matters
With curriculum/training you contribute:
to better, more reliable data
to address disparities
to improve for both children and adults
access to quality and safe health care,
better health outcomes, less
hospitalizations, and enhanced quality of
life
to impact translation of evidence into
practice and influence policy changes
to improve health care costs
Your Curriculum Development
Initiative Matters
Long-term contributions – extend
training to other health professions,
think of direct care workers or
caregivers; successful health reform
implementation; prolongation and
quality of life for both adults and
children
Short-term contributions – the sooner
you implement, the sooner you will
make available qualified professionals
