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Community Perspective on Healthcare Panel: Dr. Boyle
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) was established in 2001 to promote health and enhance lives of those with disabilities. It conducts research and surveillance on conditions like autism and intellectual disabilities through programs such as the Autism and Developmental Disabilities Monitoring Network. The NCBDDD aims to understand risk factors and improve early identification and intervention to help individuals live fulfilling lives.
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Community Perspective on Healthcare Panel: Dr. Boyle
- 1. Centers for DiseaseControl and Prevention National Center on Birth Defects and Developmental Disabilities National Center on Birth Defects and Developmental Disabilities Coleen Boyle, PhD, MSHyg Director
- 2. Our History The Children’sHealth Act of 2000 passed by Congress and signed into law by former President Clinton, required the establishment of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. In April 2001, NCBDDD was officially established.
- 3. Our mission isto promote the health of babies, children and adults and to enhance the potential for full, productive living. Our Mission
- 4. Our Divisions • Divisionof Birth Defects and Developmental Disabilities • Division of Human Development and Disability • Division of Blood Disorders
- 5. Our Efforts ImpactMillions of Our Nation’s Most Vulnerable • 1 in 33 babies is born with a birth defect • 1 in 5 Americans has a disability • Approximately 13% of children younger than 18 are affected by a developmental disability • People with sickle cell disease have a life expectancy 30 years shorter than average • Venous Thromboembolism (VTE) is a leading cause of maternal mortality in the United States
- 6.
- 7. Helping children live tothe fullest by understanding autism
- 8. • Tracking prevalence: –Autism and Developmental Disabilities Monitoring (ADDM) Network • Estimate the number and characteristics of children with autism spectrum disorder and other developmental disabilities through population-based surveillance • Conducting research: – Study to Explore Early Development (SEED) • Identify factors that may put children at risk for autism spectrum disorder • Improving early identification: – Learn the Signs. Act Early. • Improve early identification of developmental delays and autism spectrum disorder so children and families can get the services and support they need • Collaborating with partners – Interagency Autism Coordinating Committee (IACC) • Inform public/private coordination of autism research efforts CDC’s Autism Public Health Actions
- 9. Autism and DevelopmentalDisabilities Monitoring (ADDM) Network • Ongoing, active surveillance program since 2000 Methods modeled after the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP): multiple source record review Largest multisite collaboration to monitor ASDs in the United States
- 10. ADDM Method Multisource, records-basedmethodology
- 11. Advantages of Usingthe ADDM Method • Population-based rather than administrative-based • Gathers information on case status, co-occurring conditions, and age of diagnosis • Collects information from multiple sources (i.e., school and health sources) • Does not rely on previous diagnosis • Collects information the same way using the same criteria for all children
- 12. ADDM: Autism andDevelopmental Disabilities Monitoring Network MMWR Surveillance Summaries: February 9, 2007 / 56(SS-1); December 18, 2009 / 58(SS-10); March 30, 2012 / 61(3); March 28, 2014 / 63(SS-02). ADDM Network Estimated Autism Prevalence Among 8-Year-Old Children All SitesSurveillance Year Birth Year Number of ADDM Sites Reporting 8-year-old Population Number of children with Autism Prevalence per 1,000 Children (Range among Sites) 2000 1992 6 187,761 1,252 6.7 (4.5-9.9) 2002 1994 14 407,578 2,685 6.6 (3.3-10.6) 2004 1996 8 172,335 1,376 8.0 (4.6-9.8) 2006 1998 11 308,038 2,757 9.0 (4.2-12.1) 2008 2000 14 337,093 3,820 11.3 (4.8-21.2) 2010 2002 11 363,749 5,338 14.7 (5.7-21.9)
- 13. Change in EstimatedAutism Prevalence Among ADDM Network Sites MMWR Surveillance Summaries. February 9, 2007 / 56(SS-1), 1-40; December 18, 2009 / 58(SS-10), 1-24; March 30, 2012 / 61(3);1-19; March 28, 2014 / 63(SS02);1-21.
- 14. Median Age ofEarliest Autism Diagnosis Children Aged 8 Years, ADDM Network, 2002-2010 MMWR Surveillance Summaries. February 9, 2007 / 56(SS-1), 1-40; December 18, 2009 / 58(SS-10), 1-24; March 30, 2012 / 61(3);1-19; March 28, 2014 / 63(SS02);1-21.
- 15. How Can YouUse ADDM Data?
- 16. Study to ExploreEarly Development (SEED) • SEED is currently the largest study in the United States to help identify factors that may put children at risk for autism and other developmental disabilities • SEED’s main research goals are: • To help understand characteristics of autism by comparing children 2-5 years old who have autism, who have developmental problems other than autism, or who are from the general population. • To look at genetic and environmental risk factors for autism
- 17. • Extensive datacollection provides detailed information • Child and parents’ genetics • Maternal infection and immune function risk factors • Maternal hormonal risk factors • Obstetric outcomes and complications • Other maternal risk factors • e.g. medications and occupational exposures • Child’s developmental characteristics • and co-occurring health conditions • Progress to date • Phase 1 – Data analysis underway • 750 children with autism spectrum disorder, 750 children with developmental delays, and 750 controls • Phase 2 data collection underway to double the study size by 2016 To learn more, please visit www.cdc.gov/seed Study to Explore Early Development (SEED)
- 18. Improving the health ofpeople with disabilities
- 19. Disability and HealthActivities • Promote inclusion of people with disabilities in CDC surveys,programs,policies and communications • Network of 18 state Disability and Health Programs • Health care access • Health promotion • Emergency preparedness • Network of Public Health Practice and Resource Centers to reach key populations • Other disability research
- 20. Intellectual Disabilities • Lackof strong surveillance systems to monitor health
- 21. Intellectual and DevelopmentalDisabilities (IDD) focus • Lack of strong surveillance systems lead to… • Research cooperative agreements • University of New Hampshire – examining unmet needs in health to understand risk factors • University of Massachusetts – evaluating promising practices with potential to reduce health disparities • Pilot project – health surveillance • Research Triangle Institute • Medicaid data • Using Medicaid administrative data to monitor and characterize IDD
- 22. Intellectual and DevelopmentalDisabilities (IDD) focus (2) • Public Health Practice and Resource Centers • The Arc – HealthMeet® • Special Olympics – Healthy Athletes http://www.cdc.gov/ncbddd/disabilityandhealth/national-programs.html
- 23. Expanding the Scientificand Evidence Base
- 24. Health Surveillance ofPeople with ID • Define ID in clinically, functionally, and operationally valid ways. • Synthesize knowledge base,including data sources and surveillance methods. • Extend analyses of current data sources. • Pilot state or regional demonstrations. • Develop sustainable approaches. (Krahn,Fox,Campbell,Ramon & Jesien,2010)
- 25. Physical activity isfor everybody, every ability • Level Bullet • Third Level Bullet Physical activity lowers risk of heart disease, stroke, high blood pressure, diabetes, certain cancers, and improves mental health The 2008 Physical Activity Guidelines for Americans recommend at least 2.5 hours of moderate-intensity aerobic physical activity each week Guidelines for all adults including those with disabilities Can be achieved in multiple bouts of activity throughout the week lasting as little as 10 minutes at a time
- 26. Physical activity isfor everybody, every ability • Level Bullet • Third Level Bullet Adults with disabilities are encouraged to talk to their doctors about the types of activities that are right for them Adults who are unable to meet the aerobic physical activity guideline should start slowly according to their abilities, increasing activity over time AVOID INACTIVITY! Some activity is better than none!
- 27. CDC Vital Signs- Key evidence Over 21 million adults aged 18-64 have a disability Only 5% reported being unable to do physical activity Nearly half (1 in 2) of all working age adults with disabilities in the U.S. get no aerobic physical activity Inactive adults with disabilities are 50% more likely to have cancer, diabetes, stroke, or heart disease than those who get the recommended amount
- 28. Promising news 44%of adults with disabilities who visited a doctor in the past 12 months got a physical activity recommendation They were 82% more likely to be active at the recommended level (than inactive) compared to those who did not receive a recommendation
- 29. 1. Know thePhysical Activity Guidelines. 2. Ask your patients with disabilities about their physical activity. 3. Discuss barriers to physical activity. 4. Recommend physical activity options. 5. Refer your patients to resources and programs. What can doctors and other health professionals do? www.cdc.gov/disabilities/pa
- 30. Questions? For more informationplease contact Centers for Disease Control and Prevention 1600 Clifton Road NE, Atlanta, GA 30333 Telephone: 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348 Visit: www.cdc.gov | Contact CDC at: 1-800-CDC-INFO or www.cdc.gov/info National Center on Birth Defects and Developmental Disabilities
Editor's Notes
- #2 Good morning and thank you for inviting me to join you to discuss NCBDDD’s mission and the work we do around developmental disabilities. As I reflect on the conference theme: “Shaping the Future: Community Living through the DD Act” -- I am reminded of the way in which it resonates so well with key sector’s of NCBDDD’s work and thematic areas – making a difference across the lifespan and helping people live life to the fullest.
- #5 We have 3 divisions in our Center – Division of Birth Defects and Developmental Disabilities, Division of Human Development, and the Division of Blood Disorders.
- #8 We’ve accelerated our search for the causes of autism and ways to address the needs of families and communities. Our tracking system provides an accurate picture of autism across the United States, and we conduct the largest study of its kind to better identify risk factors and causes. Better tracking, research, and improved early identification are leading us to a better understanding of autism and better results for children. These data drive national, state, and local policy and planning activities to help children and their families get the help and support they need.
- #9 CDC has been at the forefront of documenting changes in the number of children identified with autism over the past decade. CDC data have laid the foundation for research into who is likely to develop autism, why autism develops, and how to best support individuals, families, and communities affected by autism. There remains an urgent needs to continue to search for answers and provide help to people living with autism. CDC will continue tracking the changing number and characteristics of children with autism, researching what puts children at risk for autism, and promoting early identification, the most powerful tool we have now for making a difference in the lives of children.
- #10 For more than a decade, there have been concerns about increases in the number of children identified with autism in the US and around the world. In response, CDC began tracking the prevalence of autism in the 1990’s. This effort has grown into the Autism and Developmental Disabilities Monitoring Network, or ADDM Network, which was established subsequent to the passing of the Children’s Health Act of 2000. The ADDM Network goals are to: Provide data about how common ASDs are in a specific place and time period (also known as prevalence), Describe the population of children with ASDs, Compare how common ASDs are in different areas of the country, Identify changes in ASD occurrence over time, and Understand the impact of ASD and related conditions in US communities.
- #11 ADDM uses a rigorous population-based tracking method. We collect information from children’s records at multiple community sources that educate, diagnose, treat, and provide services to children with developmental disabilities. Specifically we review and abstract records for documented signs and symptoms related to autism and for test scores related to intellectual disability. A panel of expert clinicians then reviews all information for a given child to determine if that child meets our tracking system’s case definitions, which are currently based on DSM-IV-TR criteria. (In the future, we can use the new DSM 5 criteria and compare any differences in identification). We then analyze the data and importantly report back to the community so that the findings can be used put to use.
- #12 There were several main advantages to using ADDMs method for tracking developmental disabilities. First, ADDM’s method is population-based, which means we can look at children in an entire community rather than, for example, just children who are seen at a particular clinic. Second, ADDM’s method helps provide a more complete picture of children with DDs by gathering information on case status, co-occurring conditions, and age of diagnosis. Third, we gather information from multiple sources where children with DDs are likely to receive services, such as schools and diagnostic centers. We are also able to count children with DDs even if they didn’t have an documented diagnosis, which can be delayed or overlooked particularly among children from different cultures. Fifth, this method requires many steps to maintain quality and precision, including collecting and reviewing information on all children the same way using the same criteria. These steps helped ensure that the project results are accurate and unbiased.
- #13 Over the past seven years, the ADDM Network has published period prevalence estimates for six different surveillance years. The most recent estimate of 14.7 per 1,000 children aged 8 years in 2010 – or 1 in 68 - is over double what was estimated for 2000 and 2002.
- #14 The increase in ASD prevalence observed for all sites combined is also reflected in varying degrees for most of the individual ADDM sites.
- #15 Tracking the age of earliest diagnosis enables ADDM Network data to be used to monitor key indicators. Data reported by the ADDM Network indicate that the median age of earliest known ASD diagnosis has remained fairly constant at roughly 4 and a half years. This figure illustrates how the sheer numbers of children diagnosed in these communities has risen over time, while the median age of earliest diagnosis has remained virtually unchanged.
- #16 How can you and the groups you serve use ADDM data? Raise awareness Promote early identification Plan for training and service needs Prioritize research Inform policy
- #17 CDC’s Study to Explore Early Development (SEED) SEED is currently the largest study in the United States to help identify factors that may put children at risk for autism and other developmental disabilities SEED’s main research goals are: -To help understand characteristics of autism by comparing children 2-5 years old who have autism, who have developmental problems other than autism, or who are from the general population. -To look at genetic and environmental risk factors for autism
- #19 We also work to make sure that no one is left behind, that people of all different abilities are able to live their life to the fullest. When children and adults with disabilities receive needed programs, services and health care across their lifespan, they can reach their full potential, have an improved quality of life, and experience independence. We are committed to equity in health of people with disabilities at every stage of life. CDC’s commitment to serving individuals with disabilities builds a strong public health framework, allowing CDC to implement crosscutting public health strategies (e.g., surveillance, communication/education, healthcare access) in support of a community faced with a variety of health challenges. One particular program I’d like to highlight is our state disability and health programs (in 18 states) to conduct activities including: Identifying and reducing disparities in key health indicators among people with disabilities by including people with disabilities in ongoing state disease prevention, health promotion, and emergency response activities Increasing healthcare access for people with disabilities Addressing environmental barriers, such as inaccessible healthcare facilities and examination equipment Providing training and communication to public health and healthcare providers about disability
- #20 We are including people with disabilities in our surveys, programs, policies and communications by ensuring: -People with disabilities included in CDC surveys and reports -Standard disability identifiers in HHS surveys -Enhanced accessibility of ~90 interventions in the Community Guide We fund a network of 18 state Disability and Health Programs that work within their states to improve health care access, health promotion and emergency preparedness. We fund a network of Public Health Practice and Resource Centers to reach key populations on health communications and interventions. These centers address intellectual disabilities, limb loss, paralysis, select mental health disorders, and physical activity. The Arc AC Special Olympics NCHPAD Plus TS and CHADD
- #21 Surveillance activities A lack of strong surveillance systems to monitor the health of people with ID exists. As a result, CDC/NCBDDD, with assistance from the Association of University Centers on Disabilities, convened a series of meetings in 2009-11 to consider the feasibility of conducting population surveillance of the health status of adults with ID and to develop key questions and possible approaches. This lead to four projects to build surveillance capacity: University of New Hampshire (UNH) (research cooperative agreement) seeks to identify valid and reliable data sources that maximize the quality of information and identify ways to improve existing data sources that are inadequate for studying the population. Research Triangle Institute (RTI) (contract) is developing a pilot/demonstration project in four states that can lead to a health surveillance system at the state level for people with ID. The work will enhance disability identification from administrative data and inform development of sound public health policies. Special Olympics Healthy Athletes and The Arc’s HealthMeet Project (non-research cooperative agreement), both of which are National Public Health Practice and Resource Centers (NPHPRC), use a portion of their funding to strengthen surveillance capacity. This has included efforts to link health data over time to track changes in individual health status and the creation of a database of health records for people with ID.
- #22 Lacking strong surveillance – in 2009-2011, CDC worked with AUCD to consider feasibility of conducting population surveillance on health status of adults with ID to develop key questions and possible approaches – this and work since then has lead to the following projects: Research We work to reduce Health Disparities among People with Intellectual Disabilities New Hamp - Examine through data analysis unmet need in health related areas for people with intellectual disabilities to better understand risk factors UMass - Evaluate promising practices that have the potential to reduce health disparities in selected key health indicators for people with intellectual disabilities: oral health– University of Massachusetts Medicaid Data We are currently undertaking a proof of concept in South Carolina (SC) to identify Medicaid populations living with IDD; paralysis; limb loss; and, spina bifida. In addition to characterizing the demographics of these populations, we will also assess their medical care utilization (top ten reason for inpatient acute care, emergency department and outpatient care) and associated costs. The idea is to establish this concept project in SC before expanding to other states. Once data are available for several states, we propose bringing together CDC, states, and PHPRCs to identify opportunities to improve the quality of care for the aforementioned populations with disabilities. Preliminary findings suggest that among Medicaid enrollees with disabilities the leading causes of hospitalization include ambulatory care case sensitive conditions (ACSC). For example, among those with IDD the leading causes of inpatient acute care hospitalization included urinary tract disorders and asthma. Demonstration project A designed project to inform efforts to use state-level data to enhance health surveillance of the population with ID. We have developed promising practices from this approach. RTI and University of Massachusetts Medical School completed a study to examine the feasibility of using state-level administrative data to examine the health status of the population with intellectual disability. Data sources and systems from eight states (Arizona, Texas, Tennessee, Kentucky, South Carolina, Pennsylvania, Massachusetts, and Hawaii) were reviewed using interviews, review of data dictionaries, and extraction of available data. At the state level, there is a recognized need for surveillance. Participating states expressed the desire to enhance the information currently collected and analyzed to describe the health of the ID population. To date, there has been limited success. The collection, maintenance, and interpretation of health data related to the ID population vary from state to state and even vary over time within states. Project staff reviewed a range of state-level data collection efforts, including public health surveillance, disease registries, administrative eligibility and service use data, medical claims data, and surveys. No single data source effectively describes the health of the population with ID at the state level using representative data. Data collected for eligibility, in combination with service use and medical claims data, hold promise but are only integrated in one state that was reviewed. States reported that the I/DD service agencies do not see surveillance as a primary role and therefore may not prioritize systems to allow data collection and analysis. There is an opportunity for CDC-funded Disability and Health Programs to promote a public health perspective within state DD agencies in the context of data collection and analysis, both through direct training of staff in principles of public health and in supporting data collection and analysis specific to the health of the population with ID.
- #23 Resource Centers – not only focus on prevention and resources, but also help to support strengthening surveillance capacity The Arc – HealthMeet® HealthMeet® leverages its national network of more than 700 Chapters, national disability organizations, public health systems, health professionals, university systems, and other key stakeholders to reduce health disparities and increase the longevity and quality of life for people with intellectual disabilities (ID) by providing free community-based health assessments and individualized recommendations for follow-up care. Assessments will focus on general health and body composition, vision, hearing, oral health, foot care, respiratory health, mental health and lifestyle factors such as diet and nutrition, physical activity, substance use, and access to health care. Special Olympics Of course – our long-standing partnership with The Special Olympics – whom we’re proud to collaborate on and be able to implement the Healthy Athletes Program (along with NCHPAD, the Arc, Amputee Coalition, CHADD, and Tourette Syndrome Association) The mission of the Special Olympics (SO) Healthy Athletes (HA) program is to improve the ability of athletes with intellectual disabilities to train and compete in Special Olympics. Healthy Athletes enables athletes to improve their health and well-being on and off the field by providing health screenings, services, and education directly to athletes; training healthcare professionals to better treat people with intellectual disabilities; and analyzing and disseminating findings from health screenings to raise awareness among policy makers and the media about the health needs within this population. In 2013-2014, Healthy Athletes exceeded 1.4 million screenings conducted since the program began in 1997 The past year saw development of new early childhood clinical protocols, a growing resource library of training resources to help health and wellness professionals better provide services for people with intellectual disabilities (ID); development of technical resources to enable a scaling of the Healthy Communities program; continued dissemination of collected data via conference presentations and professional and peer-reviewed publications; significant efforts at the policy and systems level to improve the health and well-being of all individuals with ID; and a rich engagement of partners at the local and national levels
- #24 We continue to work towards closing the gaps – Synthesizing knowledge base, including data sources and surveillance methods. Extending analyses of current data sources. Pilot state or regional demonstrations. And work towards developing sustainable approaches.
- #25 We continue to engage in health surveillance activities of people with intellectual disabilities through the following activities: Define ID in clinically, functionally, and operationally valid ways. Synthesize knowledge base, including data sources and surveillance methods. Extend analyses of current data sources. Pilot state or regional demonstrations. Develop sustainable approaches.
- #26 As background before we began our Vital Signs analysis – we looked to the 2008 PA Guidelines Physical activity lowers risk of heart disease, stroke, high blood pressure, diabetes, certain cancers, and improves mental health The 2008 Physical Activity Guidelines for Americans recommend that adults get at least 2.5 hours of moderate-intensity aerobic physical activity each week for substantial health benefits These guidelines are for all adults including those with disabilities Can be achieved in multiple bouts of activity throughout the week lasting as little as 10 minutes at a time
- #27 The guidelines also said that….
- #28 We analyzed data from the National Health Interview Survey in order to support our MMWR and Vital Signs **While there are other parts to the physical activity guidelines (e.g. muscle strengthening), we focused our analysis on aerobic PA (as that is the component linked to chronic disease) Some key findings from our Vital Signs report showed that: Over 21 million adults aged 18-64 have a disability defined as serious difficulty walking or climbing stairs hearing seeing concentrating, remembering or making decisions Only 5% reported being unable to do physical activity Nearly half (1 in 2) of all working age adults with disabilities in the U.S. get no aerobic physical activity Inactive adults with disabilities are 50% more likely to have cancer, diabetes, stroke, or heart disease than those who get the recommended amount
- #30 We developed a webpage that pulls together resources from multiple sites so that physicians and other health professionals have a lot of information at their fingertips. We provide links to many other great sites related to PA and other related resources as well.
- #31 Again, I would like to thank the organizers of this conference for the opportunity to speak with you and share our work around autism and intellectual disabilities. At this time, I’m happy to take your questions.