maryland’s children with special health care needs (cshcn): priority issues and data meredith pyle...

Maryland’s Children with Special Health Care Needs (CSHCN): Priority Issues and Data

Meredith Pyle - Office for Genetics and Children with Special Health Care Needs (OGCSHCN);

Ally Burleson-Gibson – OGCSHCN; and

Josie Thomas, The Parents’ Place of Maryland (PPMD)

Who are CSHCN?

Children/Youth with special health care needs (CSHCN/YSHCN): CSHCN are those children who have or who are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.

Overview of Maryland’s CSHCN population

Prevalence of Maryland children with special health care needs ages 0 -17 years

Children w ith special health care needs

15.5%

Children w ithout special health care

needs84.5%

15.5% corresponds to ~244,000 children with SHCN in 2010.

In Maryland Nationwide

Prevalence (%) of CSHCN according to 2005-06 NS-CSHCN 15.5 13.9

Prevalence (%) of CSHCN according to 2007 NSCH 20.1 19.2

% of all households with children that report having at least one CSHCN

23.5% 21.8%

CSHCN Prevalence – Types of Special Needs

22% reported to have depression, anxiety, eating disorder, or other emotional problem

31.8%: ADHD 10.3%: mental retardation or DD 6.6%: Autism Spectrum Disorder

From 2005-06 NS-CSHCN

Demographic Characteristics

Majority are White Non-Hispanic

Almost a third are African American Non-Hispanic

Over 5% are Hispanic

Race/ethnicity of Maryland children with special health care needs

58.4%29.4%

4.2%

2.7%5.3%

White NH Black NH Multi-racial NH Other NH Hispanic


Demographic Characteristics

Age Distribution of Maryland children with special health care needs

10.9%

20.9%

24.5%21.9% 21.7%

0%

5%

10%

15%

20%

25%

30%

0-3 years old 4-7 years old 8-11 years old 12-14 years old 15-17 years old% o

f tot

al M

aryl

and

CS

HC

N P

opul

atio

n


•Majority fall between the ages of 8-11 years of age

•Over half were under age 12 in 2006

Socioeconomic Characteristics

Children with special health care needs living above/below the Federal Poverty Level: Maryland vs. Nationwide

15.1% 13.9%

26.1%

44.9%

19.2%22.0%

29.9% 28.9%

0%5%

10%15%20%25%30%35%40%45%50%

0-99% FPL 100-199% FPL 200-399% FPL 400% FPL or greater

Maryland Nationwide


•Majority lived in wealthier households; almost 30% were between 0-199% FPL

•This has almost certainly changed as a result of the recession

Top Ten Priorities (from Stakeholder Survey) for CYSHCN 1. Adequate health insurance and health care financing2. Access to specialty care3. Medical Home for every child (primary care that is accessible,

continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective)

4. Families receive needed services5. Mental health screening, treatment, and services6. Access to primary care7. Early intervention services8. Access to oral health care9. Organized, community-based system of care for CYSHCN

that is easy to use (i.e. being able to find services)10. Developmental screening

Core Outcomes for CSHCN

Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive;

Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home;

Families of CSHCN have adequate private and/or public insurance to pay for the services they need;

Children are screened early and continuously for special health care needs;

Community-based services for children and youth with special health care needs are organized so families can use them easily;

Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

All the identified priorities fit into the Core Outcomes: Adequate Insurance and Financing Medical Home

-Access to primary care; access to specialty care; access to oral health care ; Mental health

Community Based Systems that are Easy to Use

-Families receive needed services; Early Intervention

Screening (Developmental)

Adequate Insurance and Financing

State vs. Nation In Maryland by Household Income (%FPL)

Adequacy of Insurance Maryland Nationwide 0-99 100-199 200-399 400 or greater

% of families who have adequate private and/or public insurance to pay for the services they need 65.5 62 52.5 61.6 65.7 71.1


•Most CSHCN in Maryland have some type of health insurance

•A significant portion of the uninsured children in Maryland lack coverage due to their citizenship status

•Underinsurance is a serious problem:

-Restrictions on the amount or scope of health benefits create unmet needs for about 30% of CSHCN

Adequate Insurance and FinancingAccording to preliminary data analysis from the

2009-10 Maryland Parent Survey: 7.4% of CSHCN were without insurance

sometime in the past year 49% of currently insured CSHCN have

inadequate insurance 40% of families of CSHCN pay $1000 or

more in out-of-pocket medical expenses per year for the child

Medical Home

Disparities exist among age groups, insurance issues, and among CSHCN with E/B/D issues

CSHCN below 200% FPL, who are Afr. American or Hispanic are also less likely to have MH.

% CSHCN successfully achieving medical home in Maryland

(Nationwide)

Overall 45.6 (47.1)

Subgroups

Age Group

0-5 years of age 54.6

6-11 years of age 47.1

12-17 years of age 40

Consistency of Insurance Coverage

Insured for the entire year 46.2

One or more periods of being uninsured in a year 34.2

Type of Insurance

With private insurance only 50.4

With public insurance only 37.1

Emotional/Behavioral/Developmental Issues

No emotional, behavioral, or developmental issues 53.3

One or more emotional, behavioral, and developmental issues 28.7


Access to Primary Care

Maryland Nationwide

% of CSHCN without any personal doctor or nurse

4.2 6.5

% CSHCN without a usual source of care when sick or who rely on the ER

5.5 5.7

Some pediatric providers do not accept Medicaid or limit the number of patients with Medicaid due to lower reimbursement rates (Focus groups on medical home conducted by the Maryland chapter of the American Academy of Pediatrics, 2005).


Access to Specialty Care

Among CSHCN who needed a referral, those

with public insurance only or with one or more E/B/D issues were more likely to

have problems getting it.

% CSHCN needing a referral for specialist care or

services and had problems getting it in

Maryland (Nationwide)

Overall 20.9 (21.1)

Subgroups

Type of Insurance

With private insurance only 18.6

With public insurance only 27.6



One or more emotional, behavioral, or developmental issues 27.8


Access to Oral Health Care

Maryland Nationwide

% of CSHCN with unmet needs for preventative dental care (of those

needing it) 6.5 7

% of CSHCN with unmet needs for other dental care (of those needing it) 13.9 9.6

Overall CSHCN non-CSHCN

% Children in Maryland age 1-17 whose teeth are in excellent or very good condition 77.1 71.6 78.5

From 2007 NSCH


Mental Health Treatment and Services

Maryland Nationwide

% CSHCN who needed and had unmet needs for mental health care and counseling 13.6 14.6


% Children in Maryland age 2-17 who needed and received treatment from a mental health professional 59.4 58.7 70.2

From 2007 NSCH


Mental Health Screening: Data? Possible sources may include Mental Health Admin, EPSDT (for Medicaid Population), and MSDE

Community-Based Systems that are Easy to Use 1 in 10 Maryland

families report difficulty using needed services

Hispanic families, those with CSHCN with functional limitations or with one or more E/B/D are more likely to have problems using needed services

% CSHCN whose services are organized in ways that

families can use them easily in Maryland (Nationwide)

Overall 89.3 (89.1)

Subgroups

Race/Ethnicity

Hispanic 75.8

White, non-Hispanic 88.4

Black, non-Hispanic 94.6

Multi-racial, non-Hispanic 84.8

Other, non-Hispanic 86

Specific Types of Health Need

Functional Limitations 74.2

Managed by Rx Meds 98

Above routine need/use of services 82.3

Rx meds AND service use 89


One or more emotional, behavioral, or developmental issues 80.9



Families Receive Needed Services Maryland Nationwide

% CSHCN needing one or more services with unmet needs for 1 or more specific family support services 22.9 27.9

% CSHCN needing family respite care with unmet needs for respite care or more services with unmet needs for 1 or more specific family support services 47.5 48.1

% CSHCN whose conditions cause financial problems for the family 17.5 18.1

% CSHCN whose families spend 11 or more hours per week providing or coordinating child's health care 8.1 9.7

%CSHCN whose conditions cause family members to cut back or stop working 25.8 23.8



% Maryland children currently living with their mother whose mother's general health and mental/emotional health are both excellent or very good 63.2 54.5 65.5

% Maryland children currently living with their father whose father's general health and mental/emotional health are both excellent or very good 66.8 54.6 69.4

From 2007 NSCH

Families Receive Needed ServicesAccording to preliminary data analysis from the

2009-10 Maryland Parent Survey: 35% of CSHCN have conditions that have

caused family members to cut back or stop working

Early Intervention

Maryland Early Intervention Indicators, 2007-2008 2007-2008

% of infants and toddlers with IFSPs who receive the early intervention services on their IFSPs in a timely manner 95.8

% of infants and toddlers with IFSPs who primarily receive early intervention services in the home or programs for typically developing children 91.2

% of families participating in Part C who report that early intervention services have helped the family 78%

% of eligible infants and toddlers with IFSPs for whom an evaluation and assessment and an initial IFSP meeting were conducted within Part C's 45-day timeline 94.8

% of all children exiting Part C who received timely transition planning to support the child's transition to preschool and other appropriate community services by their 3rd birthday 99.1

Total # of children receiving early intervention services annually 13,346

Total # of children referred to local Infants and Toddlers programs annually 11,578

From MSDE Early Intervention Indicators (2007)

Early Intervention

According to preliminary data analysis from the 2009-10 Maryland Parent Survey:

63.9 % of CSHCN have an IFSP or IEP 56.1% of parents are satisfied with the

services they receive from IFSP or IEP

Developmental Screening% CSHCN ages 0-17 who

are screened early and continuously for SHCN in Maryland (Nationwide)

% CSHCN who received any preventive medical

care during past 12 months in Maryland

(Nationwide)Overall 65.7 (63.8) 79.3 (77.1)Subgroups

Household 0-99% FPL 33.9 54.5Income 100-199% FPL 48.2 75.7(%FPL) 200-399% FPL 69.7 79.5

400% or greater FPL 79.5 88.7Hispanic 54.2 70.7

Race/ White, non-Hispanic 72.1 82.5Ethnicity Black, non-Hispanic 54.6 74.1

Multi-racial, non-Hispanic 65.8 81.3Other, non-Hispanic 69.2 79.7

Insurance Currently Insured 67.1 80.1Status Currently NOT Insured 17.1 52.2Type of With private insurance only 72.5 83.6

Insurance With public insurance only 50.9 68.9Specific Functional Limitations 64.2 76.5Types of Managed by Rx Meds 67.3 82.1Health Above routine need/use of services 54.8 70Need Rx meds AND service use 69.6 81.3

Presence of With Medical Home 71.9 87Medical Home WITHOUT Medical Home 60.8 72.6


CSHCN Priority Health Needs for Ranking Medical Home Community-based, easy to use system of care Health care insurance and financing Access to primary care Access to specialty care Mental health care Access to oral health Early Intervention services Families receive needed services Developmental screening

maryland’s children with special health care needs (cshcn): priority issues and data meredith pyle...

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