| HRSA/MCHB - Performance
& Outcome Measures
National performance measures were developed
for annual reporting by State Title V Programs under Title
V of the Social Security Act to the Maternal and Child
Health Bureau (MCHB) www.mchb.hrsa.gov of
the Federal Health Resources and Services Administration
(HRSA) www.hrsa.gov.
MCHB spearheaded the development work in collaboration
with State agencies, the Association of Maternal and Child
Health Programs (AMCHP) www.amchp.org and
others.
These measures include: Annual Reporting on a Set of Related
Outcomes Measures and Health Status Indicators; State-Negotiated
Performance Measures; and Title V Maternal and Child Health
Performance Measures. www.ahrq.gov/chtoolbx/measure5.htm#titlevincluded
An Outcome Measure is the desired result of Title V program activities
and interventions. These measures for improved health are longer-term than
Performance Measures. There are 6 National Outcome Measures (infant mortality
and child death rates). Reporting on these measures by the States is optional
until the year of the needs assessment.
A Performance Measure describes a specific maternal
and child health need that, when successfully addressed,
can lead to a better health outcome within a specific time
frame. There are 18 National Performance Measures. The
first 6 focus on children/youth with special health care
needs.
Official- 2003 - New Performance Measures for CSHCN! See p.43
ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf
- Screening: The
percentage of newborns who are screened and confirmed with conditions(s)
mandated by their State-sponsored newborn screening programs
(e.g. phenylketonuria and hemoglobinopathies) who receive
appropriate follow up as defined by their State.
- Informed
Decisions and Satisfaction with Services: The percentage
of children with special health care needs age 0 to 18
years whose families partner in decision making at all
levels and are satisfied with the services they receive.
- Medical
Home: The percentage of children with special health
care needs age 0 to 18 who receive coordinated, ongoing,
comprehensive care within a medical home.
- Health Insurance: The percentage of children with special health care needs
age 0 to 18 whose families have adequate private and/or
public insurance to pay for the services they need.
- Organized Services and Supports: The
percentage of children with special health care needs
age 0 to 18 whose families report the service systems
are organized so they can use them easily.
- Transition: The
percentage of youth with special health care needs who
received the services necessary to make transitions to
all aspects of adult life.
Each State (59 states and territories) reports on 7 to 10 "negotiated" Performance
Measures that they develop and have approved by the Maternal
and Child Health Bureau (MCHB). Each State may also develop
one "negotiated" Outcome Measure. This procedure
allows States to measure progress toward goals that are specific
to a State. https://performance.hrsa.gov/mchb/mchreports/
MCHB - Maternal and Child Health (MCH) Data
www.mchb.hrsa.gov/data/
Data from 59 U.S. States, Territories, and Jurisdictions are
from the States' annual Block Grant applications and reports.
Negotiated Performance Measures That Target HRTW Services
Measuring and Monitoring Community-Based
Systems of Care for CSHCN
http://eiri.usu.edu/projects/MandM/default.asp
The M & M project is a collaborative endeavor of the Early Intervention
Research Institute (EIRI) at Utah State University and more than
eight states across the country with the purpose to work in partnership
with states to implement a process in assessing current measurement
capacity, developing new measurement strategies, and using data
results for achieving CSHCN outcomes.
Funded through a cooperative agreement from HRSA/MCHB's DSCSHN
the purpose of this project is to understand current state
capacity to measure CSHCN outcomes and to help them enhance
their capacity through expanded measurement and monitoring
efforts.
Teams from each of the states met and developed indicators
to facilitate outcome measurement. After an extensive consensus
building process the list was narrowed down to 1-5 indicators
that represented both their state's current capacity to collect
data as well as their new strategies to achieve implementation.
This project team identified 5 indicators for HRTW &
Transition of Care.
- Transition Plan by the Age of 14:
% of YSHCN who have a transition plan by the age of 14 that
includes input from education, health, vocational rehabilitation,
mental health or other appropriate agencies, which address
transportation, housing, independent living, and necessary
accommodations.
- Regular Source of Primary Medical Care:
% of YSCHN whose regular source of primary medical care facilitates
the transition from pediatric to adult providers.
- Prepared To Serve YSHCN:
% of adult health care providers who are prepared to serve
YSHCN.
- Informed Decisions:
% of YSHCN who report satisfaction with the information and
training they received to make informed decisions about their
health care and other services.
- Received Desired Services and Supports:
% of YSHCN who received desired services and supports by age
21, including: post-secondary education, employment, health
insurance, transportation, housing, personal care attendant,
SSI, SSA-related work incentives (PASS, 1619 a & b, Ticket
to Work.)
States with HRTW Performance Measures
As HRTW and Transition of care from pediatric to adult care
become more widespread, some states included HRTW Performance
Measures. The following are states that had
Negotiated Performance Measures specifying transition services befor the 6 National Performance measures including transition were mandated (1999, 2000, 2001):
| Alabama |
"Percent of Children with Special Health Care Needs (CSHCN) enrolled in the State CSHCN Program who are referred with family consent to the Adult Vocational Rehabilitation Service for services upon their sixteenth birthday.
|
| Arkansas |
To improve the percent of 14 to 15 year
olds on Children's Medical Services (CMS) who state that
CMS transition services have helped improve their knowledge
and ability to transition into adult life.
|
| Kentucky |
Degree to which the state Title V/CSHCN
agency ensures that CSHCN have opportunities necessary
to make appropriate transitions to adult life including
healthcare, work and independence.
|
| Nebraska |
Percent of CSHCN in state CSHCN Program
that have transition plans that address health care,
including
insurance, by age 18. RETIRED IN FY 1999.
|
| New Mexico |
Percent of counties adopting the conceptual
framework of Healthy Youth/Healthy Communities through
an Assets/Resiliency model approach when working with
youth.
|
| South Carolina |
The degree to which the State assures a
transition system is developed for those children aging
out of the CSHCN program |
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