A CONSUMER PERSPECTIVE - Genetic Alliance · 2013-10-07 · A CONSUMER PERSPECTIVE. Howdidweselectourobjec0ves?$ ... ENT-VSL-1 State-based Early Hearing Detection and Intervention

Children and Youth with

Special Healthcare Needs in

Healthy People 2020:

A C O N S U M E RP E R S P E C T I V E

How did we select our objec0ves?

à 600 overall objec-ves à 100 related to CYSHCN à 46 most relevant to MCHB measures

Measure 1

OBJECTIVE HP2020 DATA SOURCE

Focus Objectives

Increase the proportion of persons who report that their healthcare providers always involved them in decisions about their healthcare as much as they wanted

HC/HIT-3 Health Information Trends Survey (HINTS), NIH, NCI

Increase the proportion of persons who report that their health care providers have satisfactory communication skills

HC/HIT-2 Medical Expenditure Panel Survey (MEPS), AHRQ

Additional Objectives

Increase the proportion of adults with disabilities who report sufficient social and emotional support

DH-17 Behavioral Risk factor Surveillance system (BRFSS), CDC, NCCDPHP

* Increase the proportion of patients whose doctor recom-mends personalized health information resources to help them manage their health

HC/HIT-4 Pew Internet and American Life Project, PEW

Families of children with special healthcare needs partner in decision-‐making at all levels.

Measure 1 Highlights

Family-‐centered care is based on the recogni:on that children live within the context of families and that families are the ul:mate decision-‐makers

for their children. Therefore, family-‐centered care promotes families par:cipa:ng as integral partners with healthcare providers in making decisions about their children’s health.


•  Family-‐centered care recognizes central role of families – Rise of the parent movement a big driver – Parents have wealth of knowledge on condi-ons and caregiving

•  Cultural and linguis-c competency is s-ll not universal but is essen-al for true partnership

•  CYSHCN themselves must partner as they come of age, not just parents and family

Measure 2 Children with special healthcare needs receive coordinated, comprehensive care through a medical home.


Focus Objectives

Increase the proportion of children, including those with special healthcare needs, who have access to a medical home

MICH-30 National Survey of Children's Health, National Survey for Children with Special Health Care Needs, (CGIS,

Increase the proportion of adolescents who have had a wellness checkup in the past 12 months

AH-1 National Health Interview Survey (NHIS), CDC, NCHS

Increase the proportion of children with mental health problems who receive treatment

MHMD-6 NHIS, CDC, NCHS (National Survey of Children's Health)

Reduce the proportion of people with disabilities who report delays in receiving primary and periodic preventive care due to specific barriers

DH-4 NHIS, CDC, National Center for Health Statistics (NCHS)


* Increase the proportion of persons with hemoglobinopathies who receive care in a patient/family-centered medical home

BDBS-3 RuSH, NIH, CDC

* Increase the proportion of persons with hemoglobinopathies who receive disease-modifying therapies


* Reduce hospitalizations due to preventable complications of sickle cell disease among children 9 years and under

BDBS-7 Sickle Cell Disease Treatment Demonstration Program (SCDTDP), HRSA; RuSH, NIH, CDC

Measure 2 Children with special healthcare needs receive coordinated, comprehensive care through a medical home.


Focus Objectives

Increase the proportion of children, including those with special healthcare needs, who have access to a medical home

MICH-30 National Survey of Children's Health, National Survey for Children with Special Health Care Needs, (CGIS,

Increase the proportion of adolescents who have had a wellness checkup in the past 12 months

AH-1 National Health Interview Survey (NHIS), CDC, NCHS

Increase the proportion of children with mental health problems who receive treatment

MHMD-6 NHIS, CDC, NCHS (National Survey of Children's Health)

Reduce the proportion of people with disabilities who report delays in receiving primary and periodic preventive care due to specific barriers

DH-4 NHIS, CDC, National Center for Health Statistics (NCHS)


* Increase the proportion of persons with hemoglobinopathies who receive care in a patient/family-centered medical home


* Increase the proportion of persons with hemoglobinopathies who receive disease-modifying therapies


* Reduce hospitalizations due to preventable complications of sickle cell disease among children 9 years and under

BDBS-7 Sickle Cell Disease Treatment Demonstration Program (SCDTDP), HRSA; RuSH, NIH, CDC


A medical home is not a loca:on; it is an approach to care centered on partnership between family and providers of all services.


•  Dispari-es exist within CYSHCN community •  Inclusion of blood disorders and blood safety (BDBS) put hemoglobinopathies and hemophilia on the na-onal public health agenda

•  Con-nuity of care is important – Lack of con-nuity of care parallels lack of con-nuity in HP objec-ves

Measure 3 Families of children with special healthcare needs have adequate health insurance and financing to pay for needed services.


Focus Objectives

Increase the proportion of persons with health insurance

AHS-1 National Health Interview Survey (NHIS), Centers for Disease Control and Prevention (CDC), NCHS, (NSCS at CDC)

Increase the proportion of insured persons with coverage for clinical preventive services

AHS-2 Children’s Health Insurance Program (CHIP), CMS; Aging Integrated Database (AGID), AoA; CMS claims data and Medicare Current Beneficiary Survey (MCBS), CMS


According to the 2009-‐2010 Na:onal Survey of Children with Special Health Care Needs, 34.3% of currently insured CSHCN have inadequate coverage (i.e., insurance that did not cover the services they needed or the costs of those services).


•  Very few objec-ves related to insurance in general and none specific to CYSHCN

•  Important to include objec-ves that facilitate access to care

•  Health insurance cannot provide the full range of services CYSHCN rely on

•  With passage of ACA health care is expanding and closing gaps for CYSHCN

Measure 4 Children receive early and con:nuous screening for special healthcare needs.


Focus Objectives

Reduce the proportion of children diagnosed with a metabolic disorder through newborn blood spot screening who experience developmental delay requiring special education services

MICH-26 Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP), CDC, NCBDDD (NBSTRN)

Increase the proportion of screen-positive children who receive follow-up testing within the recommended time period

MICH-32.2 Title V Information System, HRSA, MCHB

* Increase the proportion of children with a diagnosed condition identified through newborn screening who have an annual assessment of services needed and received

MICH-32.3 National Newborn Screening and Genetics Resource Center, HRSA, MCHB

Increase appropriate newborn blood-spot screening and follow-up testing

MICH-32 National Newborn Screening and Genetics Resource Center, Title V Performance Measures, HRSA, MCHB, CDC

Increase the number of States and the District of Columbia that verify through linkage with vital records that all newborns are screened shortly after birth for conditions mandated by their State-sponsored screening program


Increase the proportion of newborns who are screened for hearing loss by no later than age 1 month, have audiologic evaluation by age 3 months, and are enrolled in appropriate intervention services by age 6 months

ENT-VSL-1 State-based Early Hearing Detection and Intervention (EHDI) Program Network, CDC, and/or specific State data (DGIS, TVIS)

Increase the percentage of young children with an Autism Spectrum Disorder (ASD) and other developmental delays who are screened, evaluated, and enrolled in early intervention services in a timely manner

MICH-29 NS – CSHN, HRSA; Autism and Developmental Disabilities Monitoring (ADDM), CDC, NCBDDD

Increase the proportion of preschool children aged 5 years and under who receive vision screening

V-1 National Health Interview Survey (NHIS), NCHS, CDC



Focus Objectives


















Focus Objectives



















*Increase the proportion of children who are ready for school in all five domains of healthy development: physical development, social-emotional development, approaches to learning, language, and cognitive development

EMC-1 PDS: National Survey of Children’s Health (NSCH), HRSA, MCHS; CDC, NCHS; National Household Education Surveys (NHES), ED

* Increase the proportion of children with sickle cell disease who receive penicillin prophylaxis from 4 months to 5 years of age

BDBS-6 RuSH, NIH, CDC, (SCDTDP)

* Increase the proportion of persons with a diagnosis of hemoglobinopathies and their families who are referred for evaluation and treatment

BDBS-2 RuSH), NIH, CDC, (SCDTDP)

* Increase the proportion of persons with a diagnosis of hemoglobinopathies who receive early and continuous screening for complications

BDBS-4 RuSH, NIH, CDC, (SCDTDP)

* Increase the proportion of hemoglobinopathy carriers who know their own carrier status

BDBS-10 RuSH, NIH, CDC (SCDTDP, NNSIS)


Some people describe the current state of early iden:fica:on as “screen it and leave it,” meaning there is liSle follow-‐up if an issue is detected. This is not an acceptable philosophy.


•  More objec-ves than any other category – Underscores that screening is as important as treatment and care

•  Lack of emphasis on con-nuous screening – Many objec-ves related to newborns and children, but few adolescent or early adulthood objec-ves

•  Evidence-‐based screening helps prevent disease, promote health, and empower children, youth, and families

Measure 5 Community-‐based services are organized for easy use by families.


Focus Objectives

Increase the proportion of children with disabilities, birth through age 2 years, who receive early intervention services in home or community-based settings

DH-20 Individuals with Disabilities Educa-tion Act (IDEA) database, DoED, Office of Special Education Programs (NSCH, DGIs)

*Increase the proportion of people with disabilities who participate in social, spiritual, recreational, community, and civic activities to the degree they wish

DH-13 National Health Interview Survey Supplement, CDC, NCHS

* Reduce the proportion of people with disabilities who report physical or program barriers to local health and well-ness program

DH-8 National Health Interview Survey (NHIS) Supplement, CDC, NCHS

* Reduce the proportation of people with disabilities who encounter barriers to participating in home, school, work, or community activities


* Reduce the proportion of people with disabilities who report barriers to obtaining the assistive devices, service animals, technology services, and accessible technologies that they need



Reduce the number of children and youth with disabilities (aged 21 years and under) living in congregate care resi-dences

DH-12.2 Survey of State Developmental Disabilities Directors, University of Minnesota

Increase the number of Tribes, States and District of Columbia that have public health surveillance and health promotion programs for people with disabilities and caregivers

DH-2 TVIS (Block Grant)

* Increase the proportion of community-based organizations (CBOs) that provide outreach and awareness campaigns for hemoglobinopathies

BDBS-9 Hemoglobinopathies (RuSH), NIH, CDC

* Increase the proportion of young children with phonologi-cal disorders, language delay, or other developmental lan-guage problems who have participated in speech-language or other intervention services

ENT-VSL-21 NHIS, CDC, NCHS

Measure 5 Community-‐based services are organized for easy use by families.


Focus Objectives

Increase the proportion of children with disabilities, birth through age 2 years, who receive early intervention services in home or community-based settings

DH-20 Individuals with Disabilities Educa-tion Act (IDEA) database, DoED, Office of Special Education Programs (NSCH, DGIs)

*Increase the proportion of people with disabilities who participate in social, spiritual, recreational, community, and civic activities to the degree they wish


* Reduce the proportion of people with disabilities who report physical or program barriers to local health and well-ness program


* Reduce the proportation of people with disabilities who encounter barriers to participating in home, school, work, or community activities


* Reduce the proportion of people with disabilities who report barriers to obtaining the assistive devices, service animals, technology services, and accessible technologies that they need



Reduce the number of children and youth with disabilities (aged 21 years and under) living in congregate care resi-dences

DH-12.2 Survey of State Developmental Disabilities Directors, University of Minnesota

Increase the number of Tribes, States and District of Columbia that have public health surveillance and health promotion programs for people with disabilities and caregivers

DH-2 TVIS (Block Grant)

* Increase the proportion of community-based organizations (CBOs) that provide outreach and awareness campaigns for hemoglobinopathies

BDBS-9 Hemoglobinopathies (RuSH), NIH, CDC

* Increase the proportion of young children with phonologi-cal disorders, language delay, or other developmental lan-guage problems who have participated in speech-language or other intervention services

ENT-VSL-21 NHIS, CDC, NCHS


Coordinated, barrier-‐free design is essen:al for easy-‐to-‐use community services, and this cannot be accomplished without coopera:on among mul:ple stakeholders.


•  Availability vs. access •  Stakeholder coopera-on needed to improve services that are fragmented by mul-ple funding streams

•  Community brokers help facilitate connec-ons •  Shared goal for all service providers should be, “What you need, when you need it.”

Measure 6


Focus Objectives

Increase the proportion of youth with special healthcare needs whose healthcare provider has discussed transition planning from pediatric to adult healthcare

DH-5 NS-CSHCN

* Increase the proportion of adolescents and young adults who transition to self sufficiency from foster care

AH-4 National Youth in Transition Data-base (NYTD), ACF, ACYF


* Increase the proportion of persons with a diagnosis of hemoglobinopathies who complete high school education or a General Education or Equivalency Diploma (GED) by 25 years of age


Youth with special healthcare needs receive the services necessary to transi:on to adult healthcare, work, and independence.


Transi:on to adulthood is the ul:mate outcome of all the MCHB Performance Measures, but fewer than half of pedia-‐

tricians are providing transi:on support services and few ini:ate transi:on planning early.


•  Lack of provider capacity to serve young adults in transi-on

•  Transi-on from pediatric to adult health care needs to start early

•  States are now beginning to include youth in the planning and development of transi-on

Takeaways

HP2020 objec-ves: •  Are more focused on adults than children •  Contain li]le con-nuity across life stages –  Independently developed

•  Focus on specific condi-ons – New BDBS topic area

Resources

•  Download the Consumer Perspec-ve – www.gene-calliance.org/healthypeople

•  Family Voices – www.familyvoices.org

•  Division for Children with Special Health Needs – www.mchb.hrsa.gov

•  Children and Youth with Special Health Care Needs Knowledge Path (MCH Library) – www.mchlibrary.info

Feel free to contact us

•  Vaughn Edelson, Gene-c Alliance – [email protected], (202) 966-‐5557 x213

•  Trish Thomas, Family Voices – ][email protected], (505) 872-‐4774 x5

•  Dr. Bonnie Strickland, HRSA – [email protected], (301) 443-‐9331

•  Diana Denboba, HRSA – [email protected], (301) 443-‐9332

Documents

A CONSUMER PERSPECTIVE - Genetic Alliance · 2013-10-07 · A CONSUMER PERSPECTIVE. Howdidweselectourobjec0ves?$ ... ENT-VSL-1 State-based Early Hearing Detection and Intervention