caring. serving. empowering - hsc health...the hsc foundation is the parent corporation and...

This HSC Pediatric Center Board of Directors approves and has adopted this CHNA and implementation strategies as stated herein.

Community Health Needs Assessment (CHNA) 2012-2014

Full Report

Prepared by:

Special Needs Consulting Services, Inc. (SNCS) An Affiliate of the HSC Health Care System 1150 18th Street, N.W. Washington, D.C. 20036 202-595-3648 www.sncservices.com

Caring. Serving. Empowering

http://www.sncservices.com/

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2012-2014 CHNA Abstract The Patient Protection and Affordable Care Act (Pub. L. No.111-148) was enacted March 23, 2010. Section 9007 of that Act includes a specific tax-exemption requirement for nonprofit hospital facilities to conduct and implement a Community Health Needs Assessment (CHNA) once every three years. The first required CHNA must be completed by the end of the hospital facility’s first tax year beginning after March 23, 2012 and is effective for three tax years. The CHNA must include a strategy to address certain unmet community health needs that were identified as part of the assessment.

HSC Pediatric Center (HSCPC or the Hospital) and its affiliates have prepared this comprehensive health needs assessment in calendar year 2012 following preliminary guidelines published by the IRS as of November 21, 2011. HSCPC intends to use this report to strategically guide future operations for the betterment of the populations we do and can serve. Implementation strategies developed as part of this effort are designed to improve health care access, health outcomes, or address other health related needs that are lacking for populations at social and medical risk due to income status.

The HSCPC is a specialty children’s hospital that has served a medically complex, chronically affected population from the District of Columbia and suburban Maryland and Virginia for over 120 years. It is part of The HSC Health Care System (HSC), which also consists of a special need’s Health Plan (HSCSN), Home Health Agency (HSCHC), the National Youth Transitions Center (NYTC), a nationally focused consulting firm (SNCS) and The HSC Foundation. The HSC Foundation actively addresses many of the traditionally unfunded needs of this predominantly indigent population. For decades, HSC has partnered with local Medicaid agencies to properly address the ever changing needs of long-term medically high-risk children. HSC also collaborates with many community organizations to provide a variety of needed services beyond hospital care for this specialty population.

This CHNA received input from a broad base of public health experts and community members served by HSCPC including The District of Columbia and Maryland Departments of Health, Health Services for Children with Special Needs, and the HSC Foundation. We contacted over 50 targeted health care providers, special needs care coordinators, health care association members, and members of the medically underserved community who completed surveys or participated in structured interviews specifically designed for this assessment. The CHNA also examined recent published local statistics and other related articles on community health needs assessment results.

Based on findings and recommendations from public health experts and community members, HSCPC examined the following unmet community health needs: (1) Lack of insurance coverage, (2) Lack of available services, (3) Needed (New) services not currently available, and (4) Barriers that hinder access to services. HSCPC will launch four initiatives in 2012 to address identified unmet needs: (1) increase capacity and services to improve access for needed outpatient care, (2) increase outpatient charity, (3) work with specific community partners to help define and test a more effective medical home model, and (4) work with specific community partners to improve transitions from both youth to adult institutional care, and from chronic inpatients to outpatient services. In 2013, the Hospital is also looking to expand outpatient therapeutic services and capacity beyond the current DC location and to add other needed services at the hospital location which may include enhanced parent trainings or other community services.

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Foreword

The HSC Foundation is the parent corporation and management company for The HSC Health Care

System, a group of entities that provide and support health care, social services, educational, research

and training, and consulting services to the special needs community in the metropolitan Washington

DC region and nationally. The entities consist of:

- The HSC Pediatric Center

- Health Services for Children with Special Needs (HSCSN)

- HSC Home Care

- The National Youth Transition Center, and

- Special Needs Consulting Services

The HSC Foundation Community Benefit Statement of Philosophy

The HSC Health Care System have a strong and long tradition of collaborating on all of its initiatives to

improve access to services, strengthen families, and build collaboration within the special needs/disabled

community. This philosophy of collaboration is a “core-belief” in our approach to providing and

supporting community services and benefits. Central to our direct efforts over the past decades is the

objectives of developing an expanded community network of nonprofit, government, corporate and

charitable partners that share and pursue mutual goals to benefit the collective special needs/disabled

community as a whole. The HSC HealthCare System and the network deploy a wide array of resources

that range from charitable care to grants, direct services and indirect support.

The population at risk we serve includes children, adolescents, and young adults. However, we

recognize the importance of attracting additional elements such as families, schools, and other agencies

to successfully address problems. In addition, effective community benefit and service efforts must

achieve progress beyond the health care arena and include addressing social determinants, recreational,

nutritional, transportation, and supportive as well as advocacy needs. The HSC Health System’s wide

scope of partners and services reflects this philosophy.

Given the progress made in advancements within childhood chronic illness in the past 50 years, we are

also significantly involved in planning and implementation of transition programs that will enable

special needs/disabled populations to advance from school to work and dependence to independence.

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In order to successfully execute this philosophy, The HSC Foundation established the National Youth

Transitions Center, and has organized a network of partners listed on our website

(www.hscfoundation.org). We also routinely work with governments on all levels and have specific

working relationships with federal agencies in education and labor through our partnership

collaborative.

The HSC Foundation annually provides a significant amount of grants and awards to individuals, and

organizations in the special needs community over the past several years. However, we also deeply

believe community service and benefit requires more than money. Consequently, we have offered and

are especially committed to a variety of direct service programs, employee volunteer efforts, and regular

community health promotion events.

In conclusion, we believe our community benefits/services must be organized in the form of a collective.

Since health and health status is influenced by many non health determinants, our philosophical belief is

that families must be strengthened and enabled to support us in these endeavors. Community benefit and

services happens best by inclusion of many institutions and individuals and extends far beyond a

financial framework to include quality services, volunteerism, direct charity and the human spirit.

http://www.hscfoundation.org/

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Table of Contents

Page

CHNA Abstract …………………………………………………………………….... 2

Foreword ……………………………………………………………………………….. 3

1. Executive Summary………………………………………………………………...6

a. HSCPC Mission and Vision ……………………………………….……….. 6

The Community we Serve ……………………………………………………………….. 6

Community Benefit Activities Currently Undertaken by HSC Healthcare System ….. 9

Goals of the CHNA ………………………………………………………………………... 16

b. CHNA Methodology …………………………………………………… 17

c. Summary Findings and Implementation Plan Overview …………… 17

2. Detailed Findings and Implementation Plans ………………………………. 19

a. Community Patient and Provider Demographics ...………………… 19

b. Methodology and Summary of Community Input …………………….. 22

c. Key Findings on Need and Related Implementation Plans ……….….. 24

i. Lack of Insurance Coverage ………………………………….. 25

ii. Lack of Adequate Health Care Providers …………………….. 27

iii. New Services Needed to Improve Health Outcomes………….. 34

iv. Barriers That Hinder Access to Services ……………………... 38

d. Summary and Conclusions ………………………………………………. 41

3. Acknowledgements and HSC Healthcare Board of Directors ………………. 43

4. References (Bibliography) …………………………………………………… 44

5. Appendices ……………………………………………………………………... 46

a. List of Community Participants …………………………………………… 46 b. Survey Findings Summary ………………………………………………… 47 c. Profile of Key Providers (Health) ………………………………………….. 51 d. Table from MD CHNA on performance on core outcomes for CYSHCN….. 52

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I. Executive Summary

A. Mission and Vision

HSC Pediatric Center (HSCPC or the Hospital) has provided specialty rehabilitative and transitional

medical care to children for over 120 years. We treat infants, adolescents, and young adults with

medically complex illnesses or chronic disabilities such as developmental delays, cerebral palsy,

pervasive respiratory diseases, and brain damage. HSCPC also provides family-centered care which

includes services to help the entire family understand and successfully adapt to the life issues related to

the chronically disabled child. It is our mission to provide the highest possible quality care and to

improve both health outcomes and experiences for the population we serve.

The Hospital’s vision is to lead the region in producing or facilitating comprehensive, supportive,

culturally competent, respectful, and high-quality health care services for children with ongoing special

health care needs. We will continue active participation in projects with government, private, and

philanthropic organizations both locally and nationally to help ensure unconditional access to needed

services by all chronically disabled populations.

The Community we Serve (CHNA population target and Unmet Needs Focus)

HSCPC’s community is defined as patients age 0-21 with medically complex illnesses or chronic

disabilities (“Children with Special Health Care Needs”) in the District of Columbia (DC), and within 50

miles of our Northeast DC location, in both suburban Maryland and Virginia. Based on 2011 data, the

HSCPC patient population is 36% from DC, 52% from suburban Maryland, and 12% from suburban

Virginia. The two maps below show the zip codes in Washington D.C. and Suburban Maryland where

the majority of HSCPC patients reside.

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The Hospital provides both inpatient and outpatient services which are focused primarily on medically

complex pervasive conditions. Approximately 90% of the patients we serve are covered by Medicaid

and are therefore indigent.

As depicted in Table 1 on the next page, inpatient stays include a hospital service group of patients

identified as “developmental”. Developmental patients have much more long-term, medically complex

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conditions and an average length of stay (ALOS) of 554 days. The overall hospital ALOS is 80 days; 45

days for non-developmental patients including a Medical Extended Care group. HSCPC adopted

“Medical Extended Stay” as a new clinical category in 2011 to distinguish the more medically complex

patients being admitted to the hospital requiring longer transitions. Outpatient care at HSCPC is more

specialized to address adaptive or palliative goals of the chronically disabled child.

Table 1. HSCPC Inpatient Mix by Type of Admission, CY 20111

Hospital Service Groupings2 # Admits1Patient

Days ALOS% DC

Admits% MD Admits

% VA Admits

Rehabilitation 60 1,395 23 27% 63% 10%Preemies 114 4,195 37 48% 42% 10%Medical 193 8,369 43 31% 56% 13%Medical Extended Care 20 3,360 168 40% 45% 15%Developmental - (Long Stay) 29 16,073 554 45% 41% 14%

Total All Services2 416 33, 392 80 36% 52% 12%

Hospital Patient Profile for Calendar Year 2011

1 All patients admitted or already in house during 2011 are included.2 Approximately 10 Respite care stays (avg. 3.5 days) excluded from above data.

1

HSCPC also provides parent training or counseling associated with the ongoing care required for

patients discharged to home or for care between outpatient treatments. These trainings are typically

required for patients with G-tubes, technology dependencies, and chronic physical disabilities. The

family support trainings also involve resource coordination for specialized services including,

transportation, nutrition, personal care, adult transition support, and respite.

Community Benefit Activities Currently Undertaken by the HSC Health Care System

The HSC Healthcare System (HSC HCS) is dedicated to improving access to services for individuals

who face social and health care barriers due to disability, chronic illness, or other circumstances that

present unique needs (taken from the HSC Foundation Website). The organization consists of several

entities that address this overall mission and include: (1) a specialty hospital (HSCPC), (2) a carve-out

medical health plan (HSCSN), (3) a home health agency (HSCHC), (4) a foundation (HSC F) and

National Youth Transitions Center (NYTC) (5) and a special needs consulting firm (SNCS). HSC

Health Care System recently broadened its service audience to individuals with disabilities of all ages. It

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established a Community Benefit Program within the HSC Foundation entity designed to involve the

organization in mission driven activities beyond its local subsidiaries or enterprises.

The HSC Health Care System offers a comprehensive approach to caring, serving, and empowering

individuals with disabilities and has the following guiding principles:

• To work with government and private partners on all initiatives

• To select initiatives that address an identified information or service gap and that add value to

existing work

• To bring additional funding (federal, corporate, foundation) to initiatives by serving as funding

partners that have local impact and national relevance, and

• To support research and education, and advocacy that improves policies, programs, and health

conditions.

Since The HSC Foundation began, it has supported a long list of activities and programs to benefit

individuals of all ages with disabilities. Some of these activities involve significant financial

contributions for relevant programs at HSCPC and HSCSN that are not traditionally reimbursed, and

other local or national initiatives focused on the unmet needs of a disabled community. The HSC

Foundation is obligated and committed to supporting and financing services at HSCPC and HSCSN that

are not reimbursed by other public or private sources. In addition, The HSC Foundation provides a wide

range of support for the disabled community as a whole to facilitate access to services and quality of life

for individuals and families impacted by special needs conditions and circumstances. As detailed below,

each HSC Foundation entity has actively supported various programs or activities to enhance life

experiences and/or health outcomes for the disabled community.

1. HSCPC (the Hospital) has served a population that has been approximately 90% Medicaid since

it became a hospital in the mid 1950s. The reimbursement has rarely been at or above costs;

and many medically needed services provided to this indigent population were never

adequately covered by the payer mix. Disproportionate Share Funds allocated to cover

Medicaid payment shortfalls were severely reduced in the District beginning in 1996. Since

that time, the operating cost of caring for patients has significantly exceeded payment and

has resulted in substantial Medicaid uncompensated care costs (UCC). The HSC foundation

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has underwritten Medicaid UCC at the Hospital in excess of $10 million since 2007;

allowing the Hospital to continue quality, medically needed and mission driven care

delivery.

In addition to covering medically needed, un-reimbursed services to the indigent population,

HSCPC provides community benefits activities that include (1) community health

education, (2) community health research and coalition building, (3) in-kind donations of

equipment and space, and (4) dedicated volunteer staffing. HSCSN and the Foundation

were both motivated to develop or support additional community programs that would help

the chronically disabled community avoid or lessen institutional care days and improve their

overall quality of life.

2. HSCSN (the Health Plan) was incorporated on February 2, 1994 to manage care of and improve

access to services for children and young adults with special health care needs. It began as a

demonstration project under a DC Health Care Financing Administration 1115 waiver.

Today this ground-breaking managed care organization is currently serving more than 5,000

children and young adults in the District of Columbia’s Medicaid Program who have

Supplemental Security Income (SSI) or are SSI-eligible. As part of the HSC Health Care

System, HSCSN offers a comprehensive managed care approach that involves (1) disease

focused care coordination, (2) timely access and usage of services to prevent disease and

restore optimal health or adaptation to chronic conditions, (3) facilitated social and

educational services among both members and their families and care providers to improve

outcomes, and (4) maximization of monies allocated for health care and member services.

The HSCSN mission also includes beneficial community activities which involve outreach

to family and community support groups to jointly identify and creatively remedy situations

that threaten the optimal health of members, their families, and the disabled or at-risk

community at large. Through HSCSN, The HSC Foundation independently funds the

activities below not covered under the District of Columbia managed care contract.

a. The MLK Family Care Development Center provides a multipurpose room for community

trainings and meetings, child care facilities, family support activities, and a community

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resource corner. Families or individuals in the surrounding South East DC community may

walk-in and obtain information about various community resources available to them.

b. Sponsorship and Participation in the Community Services Advisory Committee (CSAC).

CSAC meets monthly and is a committee of adolescent members and their families, health

care providers, experts in EPSDT and various at-risk disease modalities, advocacy groups,

District of Columbia agencies, and other community representatives actively committed to

improving health outcomes for children with special health care needs. HSCSN hosts the

meetings which were organized to solicit recommendations to help improve HSCSN

services to its members. CSAC gives a voice to members and their families and empowers

them as self-advocates.

c. Parent Advocacy Support Groups (PALS), is a community based peer outreach program

designed to provide advocacy training, peer support, and mentoring to HSCSN members

and their families. The group meets monthly and receives training from HSCSN and

community partners on family rights, access and navigation through health and education

systems. HSCSN provides free transportation, breakfast, lunch, or dinner, and child care.

d. Male Caregivers Advocacy Support Group (MCAS). HSCSN created this program to

provide outreach, training opportunities, and empowerment to the male caregivers of

HSCSN members as well as other special needs children. HSCSN works with the

Georgetown University Center for Child and Human Development to help increase health

awareness among this target group. MCAS members participate in community events and

conduct outreach and peer training as well. The MCAS program received the 2011

National Fathers Initiative Grant for capacity building.

e. Youth Athletic Program (YAP) is an inclusive adapted sports program for at-risk youth. It

was launched in 2007 with summer soccer and now features flag football in the fall, golf in

the spring, and basketball in the winter. These programs are funded by the HSC Healthcare

Therapeutic Recreation Program.

f. Healthy Living Program (HLP) is an obesity awareness and prevention program open to the

entire community. HLP also promotes healthy lifestyles as well through free exercise

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classes offered at the MLK community room four times a week. Participants are also given

useful information on weight management and specific disease topics.

g. Community Collaboration Projects. The two community collaborative projects below

provide particular benefit to the community:

i. Travel Training for the Disabled. HSCSN works with the DC Center for

Independent Living to train and educate HSCSN members on how to use public

transportation.

ii. Family Navigator Program. HSCSN partners with Advocates for Justice in

Education (AJE) to train HSCSN member parents to become family navigators.

Once training is successfully complete, the parent may work with HSCSN care

managers and other family members to some degree to help with resource

coordination and other family support services.

3. HSC Foundation Grantees. The HSC Foundation funds several local and national initiatives

that support assistance to youth with disabilities and their families. The programs target

gaps in funded medical, social, or economic programs designed to benefit a special needs

population. Below is a summary of several funded Grantees. A complete list and more

detailed information is available at www.hscfoundation.org:

a. Children’s Hospital Boston. HSCF sponsored the State of the Science Conference which

included a keynote presentation by disability advocate and motivational speaker, Greg

Smith.

b. Children’s Hospital Boston/Harvard Medical School. HSCF sponsored a study to

determine the incidence, prevalence, and survival of selected chronic illnesses. It was

followed by a final paper on study findings indicating the economic impact of youth with

disabilities as they transition into adulthood.

c. City Year. The HSC Foundation is joined by the Mitsubishi Electric America Foundation

as a funding partner in City Year's inclusion initiative.

d. Disability Funder’s Network. HSCF Sponsorship of a series of informational

teleconferences around topics relating to disability, including youth transitions


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e. The Washington Center. Funded expansion of the Public Service Internship Program for

College Students with Disabilities.

f. Kingsbury Center. In partnership with The George Washington University, internship

opportunities for students with severe learning disabilities

g. Fihankra Akoma Ntoaso (FAN). Program support for their Positive Youth Development,

Youth Ensemble, and Transitions Programs

h. John F. Kennedy Center for the Performing Arts. Sponsorship of five internships for youth

with disabilities within cultural organizations in the Washington metropolitan area.

i. The George Washington University, Graduate School of Education and Human

Development. Sponsored a multiple case study investigation to learn how three selected

school districts in two states are serving children with special health and mental health care

needs, interactively between education and health or mental health care professionals.

Sponsored the creation of an informational brochure entitled "Partnering with Your Child's

School: A Guide for Parents".

4. The National Youth Transitions Center and National Veterans Center was developed by

The HSC Foundation in 2011 to help youth and young veterans with disabilities achieve

their greatest level of independence. The Center supports timely interventions for young

people or veterans with a variety of physical, sensory, and intellectual disabilities who are in

transition. The center also provides comprehensive transition support or information to (1)

families who have a young person with a disability, (2) organizations that service youth with

disabilities, (3) government agencies, (4) universities, and (5) policy makers.

This innovative approach brings together resources from multiple organizations into a single

location that provide transitions-related services, research, public policy, best practices, pilot

projects, and evaluation. The goal is to enhance the ability of young people and young

veterans with disabilities to enter and re-enter the workforce, participate in and contribute to

community life, and become productive members of society.

There are currently more than forty (40) partners who include but are not limited to: Able

Forces, Inc., Autistic Self Advocacy Network, DC Department of Disability Services,

http://www.hscfoundation.org/publications#familypartnering

http://www.hscfoundation.org/publications#familypartnering

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Mitsubishi Electric America Foundation, United Cerebral Palsy, National Alliance to

Advance Adolescent Health, and The American Association of People with Disabilities,

Goodwill of Greater Washington, the Marriott Foundation – Bridges …from School to

Work, Montgomery College, Mental Health Association of Montgomery County, George

Mason University, the George Washington University, the University of the District of

Columbia, National Health Foundation, the John F. Kennedy Center for the Performing

Arts, the Smithsonian Institution, the ARC of Montgomery County, Prince Georges, and

Southern Maryland and others. A complete list of organizations can be reviewed on the

HSCF website (www.hscfoundation.org) under HSC Foundation partners –partnership

network. Ultimately the Centers’ partners bring their expertise and resources to create

successful programs that serve as models for communities across the country. This

community initiative helps to close gaps in available services needed by a disabled

community to improve overall health outcomes and experiences. Offered services on-site

include:

i. School-to-work readiness training

ii. Family education and support

iii. Personal development and leadership training

iv. Career counseling and exploration

v. Work-based learning (mentoring and internships)

Two important Foundation programs that are part of the Youth Transitions Initiative are: (1) The

Leadership Enrichment Award Program (LEAP) and (2) the Advocates in Disability Award (ADA)

program. Both are administered by the HSC Foundation and supported by Transition Center and other

community partners. LEAP is an annual financial award plus other goods and services given to a youth

or young adult with disabilities who has distinguished themselves in the area of professional or personal

disability. The ADA award is given annually to a young individual with a disability between the ages of

14 and 26, who has dedicated himself/herself to positively affecting the lives of individuals with

disabilities and their families in the United States. The ADA award provides financial support for an

innovative project that serves and empowers individuals with disabilities. Both programs enhance the

disabled community by adding quality-of-life experiences and additional social support.


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Goals of this CHNA

The CHNA was designed to purposefully identify and then evaluate areas affecting the health needs of

child populations with special health care needs (CSHCN or Community). HSC investigated all

challenges to achieving optimum health outcomes and circumstances which increased medical risk for

this Community. Pursuant to these goals, four general categories of unmet needs were identified:

• Lack of insurance coverage for available services

• Lack of available services due to provider availability or reasonable accessibility

• Needed services not currently available that would improve overall health status or outcomes,

and

• Barriers that hinder access to needed services (e.g. fragmented provider delivery systems,

insufficient community resource support).

HSC carefully evaluated unmet need within our Community for each category described above to

identify necessary activities or services that could effectively address them. We then developed

implementation solutions that were within HSCPC’s capabilities. While some identified solutions may

not be reasonably implemented by the Hospital, the CHNA was designed to help HSCPC and the HSC

Health Care System better understand and begin to address the gaps in access to or delivery of quality

services for CSHCN that lead to optimum health outcomes and experiences.

B. CHNA Methodology

HSCPC reached out to a broad base of public health experts and community members to ensure that we

completed a thorough assessment and developed effective implementation plans. We began by

previewing available data from both the 2010 District of Columbia’s and 2010 State of Maryland’s

Community Needs Health Assessments. Next, we examined more recent comparable data from

proprietary and public health care claims and other demographic information. We also performed a

comprehensive review of relevant published articles addressing the public health concerns for the

special needs populations. Finally we interviewed approximately 50 key hospital and community

stakeholders to update published findings and more importantly, identify workable recommendations.

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The interview tools were fashioned to address common health care needs and questions within our

community as reported by expert sources. They also allowed us to solicit new participation from

community partners to help revisit and redesign needed coordinated solutions for improving special

needs patient care access and outcomes. A complete bibliography and list of community participants are

attached at the end of this report.

C. Summary Findings and Implementation Plan Overview

In general, the interviews and surveys completed by public health experts and community members

support a continuation of the same unmet needs addressed in published data related to the special needs

child population for the past 10 years. There is not a serious lack of insurance coverage for this

population; but the coverage itself often falls short in adequately covering needed services or attracting

sufficient number of needed providers. The CSHCN population remains predominantly Medicaid or

indigent. Income and related social factors (education, employment, and poverty) continue to create

additional barriers to successful care and optimum treatment outcomes.

Patient family members/caregivers have an on-going responsibility to manage demanding clinical needs

at home. When you combine these challenges with long service wait lists, multiple specialty physician

visits with limited transportation/access, and a confusingly fragmented clinical team approach

throughout the provider region, the CSHCN are increasingly at risk for more emergency/acute episodes,

poor health outcomes, or worse.

Our overall CHNA findings support the following immediate and comprehensive “needs” for our

community to address the larger, aforementioned general categories of unmet needs: (1) timely and

convenient outpatient specialty services (2) safe and permanent transitions to home or adult institutions

after age 21, (3) better coordination of multi-specialty clinical care management, and, (4) support to

working family members needing therapeutic day, after school, or summer programs. Based on our

CHNA findings the Hospital will institute the four (4) 2013 Implementation Plan initiatives below:

• Expand outpatient service capacity for improved access to needed care.

• Continue charity services at HSCPC for non-covered, medically needed Medicaid services which

includes a need to provide more outpatient rehabilitation services.

• Work with community partners as requested to help define a more effective “clinical care

coordination” model for CSHCN.

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• Work with community partners and governmental agencies to facilitate a more effective youth

transition. This may include expert support to other facilities for a longer, defined period of time

after the child/adult hospital discharge.

HSCPC will also collaborate with DC and Maryland Medicaid agencies as requested to address any

needed therapeutic day care, after care, or summer programs. Elements of the 2012 Implementation

Plan may be incorporated into an on-going five-year strategic plan. Consistent with our mission,

HSC Healthcare System may undertake other initiatives that are beyond the Hospital’s scope to

successfully address identified unmet needs for the Community we serve. However, there are some

community needs, such as a lack of selected specialty physicians, that neither the Hospital nor the

HSC Healthcare System are equipped to address. The remainder of this report provides a more

detailed description of the CHNA methods, findings, and 2013 Implementation Plan. A summary

table with the 2013 Implementation Plan steps for each identified need area is presented at the end of

this report.

The HSCPC Board of Directors endorses the 2012-2014 CHNA Report and Implementation Plan.

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II. Detailed Findings and Implementation Plan

A. Community Patient and Provider Demographics

The CHNA began with an up-to-date profile of patient population trends within HSCPC’s Community.

We then measured the needed services as compared to available care provision. Census information for

2000 and 2010 as presented in Table 2 below, shows population growth for the District of Columbia and

Suburban Maryland and Virginia to be about an average of 9.4%. The child population (age 20 and

under) only grew 3.8% between 2000 and 2010.

Table 2. Overall Population in Washington, DC Metropolitan Area

Prince George’s, Montgomery, and Ann

Arundel Counties, Maryland

District of Columbia Fairfax, Arlington Counties, Virginia and Alexandria City

2000 - Total Population 2,164,512 572,059 1,287,485 2010 – Total Population 2,372,853 601,723 1,428,319 Percent Change 10% 5% 11% Children Aged <21 2000 Census 639,306 143,830 335,998 2010 Census 659,064 136,236 357,607 Percent Change 3.09% -7.22% 6.43% Source: US Census Data published by FactFinder.com

According to data published in the Maryland CHNA:

“Maryland has a higher prevalence of CYSHCN than does the nation as a whole and the

population of CYSHCN in Maryland has grown from approximately 217,000 in 2005 to

approximately 244,000 in 2010. In 2010, more families of CYSHCN in Maryland are living in

poverty than in the five previous years. Racial and socioeconomic disparities continue to be an

issue for successful achievement of core outcomes among the state’s CYSHCN population, with

Hispanic families and families living below 200% FPL having the most difficulties. Functional

limitations and the presence of one or more behavioral, emotional, or developmental issue are

also associated with non-achievement of core outcomes for CYSHCN in Maryland.”9

SSI qualification is an important definition of the special needs population. However, public health

experts estimate that between 6% and 18% or more of the child population have a chronic or medically

complex condition that would qualify for services at HSCPC. Results from the HHS 2006 survey as

published in the D.C. 2010 Community Health Needs Assessment indicate that “…in D.C. an estimated

10.2 percent of children birth to age 5, 18.6 percent of children ages 6-ll, and 16.7 percent of children

Not Applicable

http://www.FactFinder.com

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ages 12-17 are classified as having special health care needs 6. We used a conservative estimate of 6%

and compared that to the SSI count as the potential population that would benefit from HSCPC services

or expertise.

As shown in Table 3 below, children defined as “Chronic Needs” aged 18 and under are 6 times the

number only identified as SSI. This means an estimated 59,119 Children with Special Health Care

Needs make up the HSCPC service area in the under 19 age cohort. These numbers would be slightly

higher if “children” were defined as up to or through ages 21.

Table 3. SSI and Chronic Needs Children in the Washington, DC Area

Chronic Needs 2

Location Total all Age <19 Age <19 Age <19District of Columbia 601,723 4,361 101,089 6,065Prince George's County, MD 863,420 2,505 206,357 12,381Montgomery County, MD 971,777 1,167 233,226 13,993Ann Arundel County, MD 537,656 932 125,273 7,516Arlington County, VA 207,627 107 32,597 1,956Fairfax County, VA 1,081,726 713 262,859 15,771Alexandria, VA 139,966 145 23,934 1,436Totals 4,403,895 9,930 985,335 59,1191 SOURCE: Social Security Administration, Master Beneficiary Record (OASDI Benefits), 100 per cent data . Children are defined at 18 or under. Data as of December 20102 The 2010 US Census. Per the American Academy of Pediatrics, between 6% and 32% of children have

chronic medical needs. We used the lowest or 6% in our calculation of children with chronic needs.

SSI Children 1

Total Population2

SSI ANALYSIS - DC AND SURROUNDING AREA

The top eighty percent of the patients treated at the Hospital reside in the 22 zip codes primarily east and

south of the hospital in Washington DC and Prince Georges County Maryland. Based on recently

published data, the CSHCN percentage in the District of Columbia outnumbers the national percentage6.

PG County has even higher CSHCN percentages9. As shown in Table 4, the estimated special needs

population in our catchment area grew approximately 3% between 2000 and 2010. However, the

growth in the top 22 zip codes predominantly served by HSCPC grew 15.8%.

Not Applicable Not Applicable

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Table 4. Overall Population Growth in HSCPC Primary Service Area

Total Catchment Area

22 top Zip Codes % 22 Top Zip Codes to Total

2000 census 1,122,044 214,810 19%2010 Census 1,152,907 248,797 22%Percent Variance 2.75% 15.82% 13%

HSCPC Service Area Growth - Population Age 20 and Under 1

1 Source: US Census Data as reported on FactFinder.com

Table 5 on the next page presents four broad disease categories that make up the estimated special needs

population based on data captured by HSCSN. HSCSN, a sister company, is a Medicaid Managed Care

Plan serving Special Needs Children in the District of Columbia. Children are referred to HSCSN for

enrollment based on SSI or “SSI pending or related” qualification. Therefore, HSCSN disease profiles

when extrapolated to the entire population that makes up the HSC PC service area should fairly

represent the specific health care conditions within our catchment area.

Despite the wide range of chronic diseases represented in our Community, The Hospital is currently set

up to treat only a subset of the qualifying CSHCN conditions (approximately 39%). A majority of

CSHCNs in the area have a behavioral health diagnosis and are treated at psychiatric hospitals or other

related specialty institutions. Some of the other high need diagnoses such as HIV or Sickle cell are

treated at higher level acute hospitals with intensive care units and emergency rooms as is appropriate.

The primary CSHCN conditions treated at the HSCPC are conditions requiring longer term transitional

care and/or specialty rehabilitation care prior to their discharge to home or nursing/group home. These

conditions include cerebral palsy, anoxic brain damage, spina bifida, failure to thrive related to

prematurity, chronic lung disease, and intestinal or other feeding disorders.

Behavioral health disorders represent the largest percentage of the CSHCN population (55%) in DC and

similar findings are in Maryland9. The other disease groups are also compelling. As indicated in Section

B below, the CHNA investigated the needs of the entire children special needs population within our

Community and proposed particular initiatives in those areas in which HSCPC is well-placed to offer

reasonable solutions.

Not Applicable

http://www.FactFinder.com

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Table 5. Special Needs Children by Type of Condition and County

CSHCN Age <19 1

Cerebral Palsy, Dev. Delays and

Failure to Thrive*11 Other Physical

Health Categories*

Asthma, Hemophilia, and

Infectious Diseases**

Behavioral Health Diagnoses**

HSCSN Mbrs. - Qual. DX - 2011 5,085 922 1,056 332 2,775% HSCSN Qualifying DX - 2011 100% 18% 21% 7% 55%District of Columbia 6,065 1,100 1,260 396 3,310PG County MD 12,381 2,245 2,571 808 6,757Montgomery County MD 13,993 2,537 2,906 914 7,636Anne Arundel County MD 7,516 1,363 1,561 491 4,102Arlington County VA 1,956 355 406 128 1,067Fairfax County VA 15,771 2,860 3,275 1,030 8,607Alexandria VA 1,436 260 298 94 784Totals 59,119 10,719 12,277 3,860 32,262

Source : Census Data by County for 2010 and HSCSN Member Data as of 2/2012 by qualifying diagnosis1 CSHCN population is calulated at 6% of chldren age <19 per the 2010 census.

* These two disease categories represent the predominant patient mix at HSCPC. Physical injuries or diseases

such an spina bifida are included among the 11 other health categories.

** Not predominant HSCPC admits. Behavioral health diagnoses include depression, ADHD, intellectual delays,

mental retardation, autism, and psychoses. HSCPC may treat asthma, HIV, and behavioral patients to some degree.

Estimated Special Needs Population by Major Disease Categories

B. Methodology and Summary of Community Input

We began our assessment with a comprehensive published data review that included the Health Needs

Assessments performed by the State of Maryland and the District of Columbia in 2010. We also

reviewed 22 articles published between 2001 and 2011 that addressed health care needs and

recommended solutions for improved health outcomes for the pediatric special needs population.

Several published Community Health Needs Assessments including the VHA Catholic Charities

hospitals were also examined. This information helped us to formulate interview questions and survey

documents that were relevant and consistent with industry best practices for assessing our population.

This approach also served to make sure we were aligned with important community partners.

As a next step, we confirmed and updated published data statistics. We analyzed proprietary DC claims

data from HSCSN and data from the state of Maryland to confirm diagnoses for admissions and

outpatient services. This information helped us to identify the prevalent medical conditions for what

appears to be a growing Special Needs population in this area and the available (or needed) services to

treat them effectively. HSCSN claims and care management data were also used to help focus our

review of service providers on services and geographic areas with the most care needs. This data also

further refined our survey/interview questions to address significant gaps in services so we could better

examine reasons for the gaps.

Not Applicable

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Finally we interviewed or surveyed approximately 50 public health experts and community stakeholders

which included:

• Medical directors for both the Hospital and our special needs health plan (HSCSN),

• Patient navigators for special needs patients at Children’s National Medical Center (CNMC),

Washington DC,

• Leaders, representatives, and/or members of the Community, including medically underserved,

low income, and minority populations in the community served by the Hospital.

• Six Care Manager team leaders for HSCSN representing both physical health and behavioral

health members,

• Public health agencies in DC and Maryland who support or facilitate service access for the

special needs community including:

o The Maryland Center for Maternal and Child Health (CMCH) and the Office for Genetics

and Children with Special Health Care Needs (OGCSHCN)

o DC Department of Health, Community Health Administration

o P.G. County Health Department, Infants and Toddlers Program

The survey participants also pointed us to “key” providers in the community for particular services

indicated for this population. Patient Care Managers at HSCPC and HSCSN as well identified them as

“key” based on their particular expertise in dealing with the special needs population. We profiled their

availability in terms of geographic proximity, Medicaid acceptance, and timely available appointments.

Although we profiled 22 “key” providers, eight (8) Behavioral Health providers, Six (6) developmental

pediatricians, and five (5) physical medicine and rehabilitation physicians raised patient access concerns.

Those 19 with patient access concerns are exhibited in the findings sections below. The 22 key providers

we profiled for this assessment include the following provider types:

– 2 Young-adult-focused Group Homes for hospital discharges at age 22 requiring on-

going institutional care (currently only 2 homes in DC generally meet criteria)

– 7 Child Psychiatrists or Psychiatry Practices

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– 1 Child Psychology Practice

– 6 developmental Pediatricians

– 5 Physical Medicine Centers or practices

– 1 Behavioral Health Residential Facility

C. Key Findings and Recommendations to Address Unmet Community Health Needs

After considering the potential growth and makeup of the HSCPC Community, we examined unmet

needs as specifically defined for this assessment based on both public mandates and input from specific

Hospital Community stakeholders. Both the DC and Maryland 2010 health needs assessments defined

specific goals addressing the needs of special needs children that are similar to our approach. In its 2010

Title V CHNA, Maryland published performance, associated issues, strengths, and barriers to progress

on five (5) core outcomes for CYSHCN. These are presented in Appendix D. The Maryland CHNA

chose eight priority needs to address with the Maternal and Child Health (MCH) populations. Table 6

below is extracted from that report and highlights only the four priorities affecting the CSHCN or

CYSHCN population.

Table 6. Priority Needs by MCH Population Groups9 (Four of eight related to Special Needs Children or CYSHCN)

Proposed State Priority Needs, 2011-

2015 Performance Measures Population Group

4. Access to Health Care for Children: Improve access to preventive, primary, specialty, mental health and oral health care as well as health insurance coverage for all children including those with asthma and other special health care needs

Rate of emergency department visits for asthma per 10,000 children, ages 0-4 (Data Source: Maryland Health Care Commission Hospital Database) Children, Adolescents, CSHCN

Children, Adolescents, CSHCN

6. Healthy and Productive Youth and Young Adults (Transition to Adulthood): Improve supports for the successful transition of all youth to adulthood

Percent of YSCHCN families who participate in transitioning planning (Data Source: Maryland Parent Survey)

Adolescents Youth with Special Health Care Needs

7. Strategic Partnerships: Sustain, strengthen and maximize strategic partnerships through the Community of Care Consortium to address CSHCN core outcomes in Maryland

Percent of Community of Care members who report 5 or more collaborative activities in the previous 12 months (Data Source: Maryland Community of Care Partnership Profile)

CSHCN Cross- Cutting

8. Improve Data Systems and Sharing: Improve state and local capacity to collect, analyze, share, translate and disseminate MCH data and evaluate programs

Percent of performance measure benchmarks Maryland has reached toward implementing a data sharing plan (Data Source: Maryland Title V Program)

CSHCN Cross- Cutting

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The District of Columbia published a list of 10 priorities with only one specifically related to CSHCN:

“Increase access to medical homes for CSHCN and support coordinated, family-centered systems of

care.”6 However, they also noted the following challenges:

“For children with special health-care needs, the main challenge was not being diagnosed early for developmental disorders or receiving treatment/help quick enough to reverse a disorder. There are few schools or programs to deal with delays. And there is a lack of transition services for older CSHCN.” 6

Based upon the CHNA undertaken by HSCPC, it appears that the HSCPC Community has four primary

unmet health needs, pursuant to which HSCPC has developed implementation plans which considered

DC and Maryland strategies or published issues in addition to our own needs assessment:

• Lack of Health Insurance Coverage for available services

• Lack of available services due to provider availability or reasonable accessibility

• Needed (new) services not currently available that would improve overall health status or

outcomes in the short and long-term, and

• Barriers that hinder access to services (e.g. fragmented provider delivery systems, insufficient

community resource support).

The CHNA findings demonstrating these Community health needs, as well as HSCPC’s recommended

implementation plans to positively impact each “Need” area are presented below.

1. Lack of Health Insurance Coverage

HSCPC contacted several public health agencies and community organizations to identify any child with

special health care needs without insurance and in need of health care services. These organizations

included the DC Department of Maternal and Child Health, the Maryland Infants and Children Program,

Maryland Genetics CMS program (special needs children) in Maryland, and Patient Navigators at

Children’s National Medical Center for the special needs populations.

Most of the CSHCN populations we serve qualify for either Medicaid or Medicaid Waiver coverage of

some form. The State of Maryland’s Office of Genetics and Children with Special Health Care Needs

also works with local children’s hospitals, school programs, and other community organization to

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identify and pay for outpatient special needs services for Maryland residents who are not covered by

Medicaid9. As a result, unmet need for this assessment category is relatively low.

While insurance coverage or access to insurance coverage is not an issue, many CHSCNs do not receive

services because of insurance coverage constraints for certain services. For example, Virginia Medicaid

will not pay for outpatient services outside of Virginia except for physician office levels of care.

Therefore the specialized outpatient rehabilitation services at the hospital are not covered for Virginia

Medicaid patients and the closest similar service for them is 100 miles away in Richmond, Virginia.

Another example of limited coverage is medically necessary non-covered days at the end of a stay.

Sometimes a child or infant is scheduled to be discharged but the home environment is a medical risk or

the family caregiver is ill prepared for required at-home patient care. Discharge to home is therefore

delayed for a day or more but Medicaid and Medicaid managed care plans sometimes do not pay for

these days.

Approximately 40 Virginia Medicaid children could be in need of the kind of outpatient rehabilitation

services provided at HSCPC. This estimate is based on the number of 2011 Virginia Medicaid

admissions compared to the number on the outpatient rehabilitation clinic waitlist and other referral

information. After Virginia Medicaid refused to reimburse the Hospital for outpatient care, HSCPC

proactively offered outpatient rehabilitation services to Virginia Medicaid patients as a charity or

community benefit. We will implement stronger initiatives as outlined below to address this critical

unmet health care need for indigent patients.

The Hospital also covers medically necessary non-covered days as part of our charity care program.

HSCPC provides the necessary care regardless of ability to pay or insurance coverage and these non-

covered Medicaid days are also captured and reported as charity care. In addition, HSCPC follows the

specific community benefit requirements below for non-profit hospitals:

• A written and published policy explaining eligibility for charity care or financial assistance

• Charges to indigent patients receiving medically necessary services that are discounted or waived

based on published federal poverty guidelines, and

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• Hospital policy and operational practices to make reasonable efforts to determine eligibility for

financial assistance before any collection activities are pursued

HSCPC will implement the initiatives below to address unmet need due to lack of insurance coverage.

CHNA 2013 Implementation Plan (Recommended Solutions)

1. Reach out to the INOVA hospital patient navigator and let her know that Virginia Medicaid

Patients qualify for charity outpatient rehabilitation services at HSCPC. We anticipate this effort

will help HSCPC serve more indigent patients in need of this service.

2. Dedicate additional resources to handle patient financial assistance questions to help patients in

need to qualify for charity services at HSCPC.

We hope to serve more indigent patients in need of outpatient services due to constrained insurance

coverage. Despite successful efforts to overcome unmet need because of insurance coverage, CSHCNs

often go without needed services because there are simply not enough providers within close proximity.

2. Lack of Adequate Health Care Providers or Accessible Services

The number of Medicaid providers is not always adequate for the demand or locations convenient

enough for populations in need. This circumstance is further complicated by a serious lack of health care

providers with particular specialized training who accept Medicaid and/or treat indigent patients outside

of the emergency room (ER). According to our survey and data published by DC and Maryland, both

limited availability and limited access create tremendous barriers for children with special health care

needs. Sixty-nine percent of the experts we interviewed indicated an increased need for specialized

transportation or for primary care services closer to where patients live. Inadequate family resources,

knowledge, and sophistication to navigate services also have a severe impact on access.

Because Health Services for Children with Special Needs (HSCSN) contracts with 90% of the health

care providers in DC, we used their provider list to map all DC health care providers. Table 7 below

shows the top 11 zip codes in the DC area with 93% of HSCSN members. These zip codes also

represent the highest concentration of SSI children under age 26 in DC. HSCSN has enrolled

approximately 60% of the estimated DC SSI population under age 26. Therefore, when considering all

of the estimated SSI or chronically disabled children in DC as compared to available providers,

reasonable access to care appears to be a significant issue with this population.

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Table 7. Top Volume Zip Codes in Washington, DC, Disabled Children

Zip CodeActive Members

Aged <26Total Pop. All <

26Calculated Chronic² Quadrant Est'd. SSI <263

20020 1,068 21,060 1,264 SE 1,66220019 1,248 21,584 1,295 NE 1,78420032 721 16,342 981 SE 1,12520002 470 18,230 1,094 NE 1,00620011 336 19,249 1,155 NW 54620001 211 15,813 950 NW 39920018 183 5,262 316 NE 28420010 144 10,784 647 NE 30020009 132 14,830 890 NW 23220017 104 5,785 347 NE 17320024 112 3,250 195 SW 355

Total 4,729 152,189 9,134 7,866¹ Source: Tabulations from HSCSN Member Data. 5,055 total Members; 94% in 11 zip codes.² "Chronic" calculated based on 6% of population under age 26 (per 2010 census).3 SSI for ages<26 estimated by adding 15% SSI recipients age18-50 to reported SSI recipients <19. Highlighted zip codes are areas where SSI or SSI-related children below age 26 are: (1) more than1,000 in number, (2) more than 6% of residents, and (3) are more than 100 per square-mile.

HSCSN Members as of April 2012¹ Population by Zip Code Age < 26²

Eleven Zip Codes in DC with 100+ HSCSN Members

Exhibit A on the next page identifies the HSCSN primary care provider (PCP) network density by zip

code area. Using HSCSN data to represent all PCPs, Exhibit A shows that most PCPs are located in zip

codes on the opposite side of the city from where the majority of SSI children are located. According to

data published in the DC 2010 Community Needs Assessment, 83% of the Medicaid Providers are

located in Wards 2, 5, and 46. Only 17% of the Medicaid Providers are located in wards 6, 7, and 8

where 71% of SSI children are located.

Not Applicable

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Exhibit A: Primary Care Providers per 1,000 Disabled Children in Washington DC

Similarly, Prince George’s (PG) County Maryland is another area where health care services are not in

proximity to a growing special needs population in need of them. Exhibit B shows a high concentration

of SSI children in zip codes directly east and south of the District of Columbia. These are some of the

same areas primarily served by the Hospital, and which have a growing population of children aged 18

and under. Based on data published by Maryland, providers in PG County have a much lower ratio of

physicians to population than the State average and Montgomery County. The Maryland Office of

Health Policy and Planning, Family Health Administration (Department of Health and Mental Hygiene),

identified selected areas of Prince George’s County as Medically Underserved Areas (MUA) as of

1/23/2012. The MUA areas are immediately west or south of the District of Columbia in areas such as

Capital Heights, Landover, and Accokeek. The Health Services Resource Administration (HRSA)

defines Medically Underserved Areas as “areas designated by HRSA as having too few primary care

providers, high infant mortality, high poverty and/or high elderly population.”

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Exhibit B. Disabled Children by Zip Code in Prince Georges County, Maryland

A second issue with availability of health care providers is that there simply are not enough practitioners

of certain specialties or expertise to meet the current demand. The particular specialties identified with

severe deficits in availability were physical medicine and rehabilitation (PMR), developmental

pediatrics or pulmonologists, and child psychiatry or psychology. Both the HSCPC Medical Director

and the Medical Director for HSCSN indicated that good developmental pediatricians are hard to find

and those few with extensive chronic care expertise are overbooked. Many child psychiatrists choose

not to participate in Medicaid primarily because of low reimbursement. Overall, all categories of

physicians who treat special needs children are somewhat unavailable because very few of them are in

the predominant communities where the CSHCN live. Because of additional challenges with

handicapped-focused transportation and physical access, the CSHCN may too often not get needed

outpatient treatment and therefore experience increased medical risk or outcomes.

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In Table 8 below, we profile eight “key” behavioral health providers for the special needs population.

Only one Child Psychiatry center in Prince Georges County Maryland is accepting child Medicaid

patients with a short waiting list. There were none in DC or Montgomery County Maryland available

with timely appointments or who accepted Medicaid.

Inadequate Medicaid reimbursement was the main reason given for practitioners not participating in

Medicaid. Keep in mind that a CSHCN often requires more one-on-one time for effective care delivery

and outcomes. This population is small but requires a higher use of expert clinical resources that are not

captured effectively within traditional physician fee structures. Consequently, many providers choose

not to participate or will limit participation to leverage their practices with patients requiring more

“normal” health care service time. Some physicians, particularly those providing behavioral health

services, may incorporate alternative less expensive practitioners within their delivery model to provide

services more cost-effectively.

Table 8. Accessibility of Behavioral Health Providers PROFILE OF EIGHT "Key" BEHAVIORAL HEALTH PROVIDERS

provider typespecialty (or general services

provided

,GP ,C (D **

noti NV)

ac C,ol M

deocp iz

er

divroP di

caied

M

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den is eg rn /i scc

ept nteit

A pa

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t e lsy abaD f vail

o A rum

be xteNN

ntm

enti

ppo

A*

Child Psychiatrist Child Psychiatry DC 20010 N/A Yes 30+Child Psychiatrist Neuropsychology MC 20854 Yes Yes 120

Child Psychiatrist Child and Adolescent Psychiatry DC 20008 N/A 30+Child Psychiatrist Child and Adolescent Psychiarty MC 20814 N/A 30+

Child Psychiatrist Child and Adolescent Psychiatry DC 20010 Yes Yes 56

Child Psychologist Clinical psychology MC 20852 No Yes 15Child Psychiatrist Psychology PG 20761 No 150Child Psychiatry & Psychology

child and adult mental health assessments and therapies PG 20706 Yes Yes 0-14

* Providers with "30+" in this colume were called at least 3 times in a 30-40 day period to make an appointment with no call back

It is important to emphasize there are no child psychiatrists in the most heavily concentrated zip codes

with CSHCN in the District of Columbia and Prince Georges County.

The District of Columbia Department of Mental Health offers alternative behavioral health support that

involves psychiatrists, psychologists, social workers, and other mental health practitioners within a

Not Applicable

Not Applicable

Not Applicable

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coordinated, multi-disciplinary team treatment approach. That program requires patient and caregiver

involvement that is sometimes above and beyond what a traditional MCO care manager could offer.

Without additional help in connecting behavioral health patients with this service, and coordinating care

through it like HSCSN does with its members; many patients may not comply effectively with

treatment. As a result, health outcomes continue to suffer. This points to the need for improved

coordination of interdisciplinary treatment (which is addressed in sections below) but it indirectly affects

the shortage of service providers or available services. It is clear from survey findings that the CSHCN

population needs more behavioral health providers and more convenient locations. There is also a need

for more developmental/specialty pediatricians and specialty physical medicine and rehabilitation

physicians.

Table 9 below shows a number of “key” PMR Physicians and Developmental Pediatricians for this

population. In addition to brief calls to the first four listed PMR practices, we interviewed three of the

top Pediatric Physical Medicine and Rehabilitation (PMR) physicians in the area who are based at

CNMC and who refer and provide clinical management of the Hospital’s rehabilitation service. They

indicated a current annual patient load of approximately 1,400 patients and a waiting list of

approximately 71 days. Based on this backlog of patients and other practice observations, these three

CNMC PMR physicians estimate that they could easily treat 6,000 patients a year if they had enough

physicians. These physicians also indicated their current load represents about 80% of the children with

chronic or specialized rehabilitation service needs; which means that 2 of 10 children with chronic,

medically complex physical disabilities are not referred at all because timely referrals are not available.

These experts also pointed to a lack of experienced physical therapists and in particular, those trained in

equipment assessment and related adaptive therapy. This further exacerbates this unmet need issue. The

PMR physicians indicated a plan to add 2 additional Pediatric PMR specialists in 2012 to their practice

to address the backlog. They also insisted that HSCPC should increase its outpatient therapy capacity as

well.

Of the remaining key PMR practices for CSHCN, three are geographically unavailable (2 in Baltimore

and 1 in Richmond), and the one in DC does not really cater to children according to the CNMC PMR

physicians. The key developmental pediatricians we interviewed and who primarily manage CSHCN

populations, agreed with this critical lack of specialists.

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Among the six “key” developmental physicians listed in Table 9 below, one is a pulmonologist who

practices at CNMC’s DC and Ann Arundel County Maryland locations. Both CNMC practices, which

have specialties other than pulmonology, have a wait list of approximately 60 days. According to this

doctor, developmental pediatricians have to manage patients with complex need and they cannot easily

address the treatment need in the short amount of time allotted. Lacking a successful “medical home” or

“wrap-around model” these physicians are not as available and, as a result, chronically ill patients often

go from specialist to specialist with an individual (uncoordinated) focus. It was also noted that both

physical medicine and developmental pediatrics are difficult specialties from which to get a timely

referral or appointment for new patients. This speaks to a high need for improved clinical care

coordination (see next section) and supports the lack of available providers or accessible provider

services. The health outcomes as a result range from delayed improvement to further physical

deterioration or more permanent and costly disabilities.

Table 9 shows three developmental pediatric specialists accepting patients with a wait list of 60 days.

The one with a behavioral health specialty is no longer accepting patients and the final one would not

respond to a call for an appointment after 30 days of trying.

Table 9. Developmental Pediatrician and PMR Physician Access Profile PROFILE OF SIX "Key" DEVELOPMENTAL PEDIATRICIANS AND FIVE PMR CENTERS/PRACTICES

provider type specialty (or general services) provided

,GP ,

C (Dnoti N

V)

ac C,

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umbe xte

NN

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oA

*

Developmental Peds. Developmental Behavorial DC 20010 Yes No

Developmental Peds. Pediartics Pulmonology DC 20010 Yes Yes 60

Developmental Peds. Pediartics Pulmonology AAC 21401 Yes Yes 60Developmental Peds. Developmental Behavorial MC 20853 N/A No

Developmental Peds. Developmental Pediartics PG 20707 Yes Yes 30-60

Developmental Peds. Neonatal-Perinatal DC 20032 N/A N/A 30+PMR Center Post-Acute Care DC 20010 Yes YesPMR Center PT,ST,OT for Children, No OPED BC 21209 No Yes 30PMR Center OPED,ST,OT,PT BC 21205 Yes Yes 30

PMR Center Pediartics Special Need Rehab VA 22903 YesNot at the moment 90

PMR Practice Pediartics Special Need Rehab DC & VA 20010 Yes Yes 71* A "30+" in this column means there was no call back for an appointment after 30 days and 3 attempts

Not Applicable

Not Applicable

Not Applicable

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CHNA 2013 Implementation Plan (Recommended Solutions):

As previously noted, HSCPC cannot directly affect the shortage of specific specialty physicians and

other behavioral health providers in the community. The HSCPC Community is much larger than the

subset of Special Needs children in DC managed by our sister company, HSCSN; and while we use

some of their data to profile need, this CHNA does not speak to the HSCSN members. Instead is speaks

to the assessed needs for our Community, which is a CSHCN population in suburban Virginia and

Maryland, and DC with particular need for reasonable access to providers who could serve them. The

CHNA identified an overall need for or improved access to certain specialty providers throughout the

Hospital’s service area. Despite our limitations in this area, HSCPC will implement the following to

improve access to needed services:

1. Improve patient access to timelier outpatient rehabilitation therapy services by extending

appointment hours on selected days during the week and adding Saturday appointment hours. In

addition, enhance scheduling and follow-up with scheduled patients to improve access.

2. Approach CNMC about a possible arrangement for therapy services under subcontract to them at

their northern Virginia location certain days a week and expand coverage as needed and feasible.

This would allow HSCPC to provide, specialized outpatient therapy services under their provider

number as a contracted service. It would help cover a backlog of therapy services across the

insurance spectrum and indigent patients would have improved access as well.

3. Hire and train additional therapists as needed to handle excess capacity at the current hospital

location and other available locations.

3. New Services Needed to Improve Health Outcomes

The primary objective of our community health needs assessment is to ultimately improve health

outcomes for our Community. For the high medical risk and chronically ill child population we serve,

improved health outcomes have a slightly different meaning. The goals typically involve:

• An optimum level of functioning and independence relevant to the specific chronic condition to

help prevent additional co-morbidity or other health issues

• Minimized unnecessary acute care, intensive care, or emergency care

• Quality of life

• Minimized pain, suffering, or discomfort

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The challenge has always been balancing the myriad of services needed to achieve these goals in the

most effective manner. It is a difficult task with the available services. Therefore new services or

different service approaches are being sought as potential solutions.

Our CHNA survey included several questions about new services needed for the CSHCN population

that would improve health outcomes and/or experiences. The first was a multiple choice question

adapted from another public health survey that assessed community health needs5. Respondents could

select all applicable answers, however not everyone interviewed answered this question. After a need for

transportation services, the next highest need indicated was after school or summer programs; a

combination of two answers from the table below. Better care coordination was also high on the list.

Q.1 – What is Most Needed to improve Overall Health Outcomes (8 multiple Choice) Count

Transportation 27

After School Programs or Special School Programs 19

More Mental Health Services including specialty mental health providers 27

Summer Programs (for autistics in particular (1)) 4

Better care coordination 21

More specialty services for physically impaired (DME), equipment, developmental pediatricians) 8

Other: Home aides & home therapies 11

Other: Transitioning programs 1

Several participants voiced concern that the CSHCN population faced medical risk due to lacking family

support (see answers to survey question 2 below). This question was open ended and participants freely

offered their opinions. Despite the smaller number of interviewees who chose to answer, most who did

commented that specialty after school care, all day early intervention (age 0-5), or summer programs

would effectively address a need to better support families and reduce medical risk to these children.

Overwhelmed caregivers too often forego trips to some specialists, especially those requiring frequent

visits like rehabilitation. Providing these repetitive types of services in conjunction with a school or a

day program would be more consistent and therefore beneficial to the patient according to the survey

participants.

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Another critically needed

service is youth transition to

adulthood or independence.

Q.2 – What are the Major Health Concerns (open question) Count

a Lack of training, employment and proper, affordable housing for young adults transitioning out of the program.

3

b Untreated Autism, ADHD, Depression, other mental health conditions 8

c Increases in patient medical risk and frequent relapses to acute care because of lacking family support, family capacity to manage medically complex children. Specifically, progressive respiratory diseases (asthma, obesity, physical impairment, mental health may worsen or take longer to care for.

10

d HIV and related 1

e Un treated Dental care needs 3

f Untreated or under treated preventive services and palliative care for chronic children age 0-4. (not enough PCPs trained or available to treat properly)

4

There were numerous

general comments

suggesting that chronic

needs children would benefit

medically by learning to be

self-sufficient. This would

reduce both behavioral

encounters and related

medical encounters. In

addition to self-sufficiency

transitions, general survey

comments supported better

transition to needed institutional care after age 21. HSCPC has 28 inpatients that have medically

complex long term care institutional needs. Some of them could require a similar level of institutional

care beyond age 21. Within the past two years, 5 patients who reached age 21 were transferred from the

developmental unit to other institutional facilities in the community. These facilities do not provide the

level of care required for the medically complex young adult patient conditions as most area long term

care facilities serving adults offer a lower level of clinical support than HSCPC. However, they were

placed there based on recommendation or required referral by the DC Department of Disability Services.

Two of the children died within 6 months of the transfer for reasons the Hospital could not obtain.

Both the DC and Maryland CHNAs identified youth transition services as an on-going critical need for

CSHCNs. The DC Needs Assessment published two specific areas of focus or concern for special needs

youth with measures that have not only deteriorated between 1999 and 2007, but also are worse than the

U.S. measures. One particular need for new service or service intervention according to that report,

“…CSHCN families reporting that youth receive the necessary services to adequately transition to

adulthood.”6.

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The Maryland CHNA has also selected youth transition as one of eight initiatives it will pursue. An excerpt from that CHNA is presented below. “Youth transition to adulthood is one of the six core outcomes identified by the federal Maternal and Child Health Bureau for children and youth with special health care needs (CYSHCN). Both quantitative and qualitative data collected for Maryland’s 2010 needs assessment indicate that Maryland is struggling to ensure that all YSHCN receive the services Necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. According to the 2005-06 National Survey of Children with Special Health Care Needs (NS-CSHCN), Maryland ranked 42nd in the nation on achieving this core outcome; less than 38% of Maryland families of YSHCN ages 12-17 reported that their child received the services necessary to make appropriate transitions to adult life. Maryland scored below the national average on many other of the 2005-06 NS-CSHCN transition indicators.” 9

Maryland’s 2011-2015 plans to address this need involve analysis of critical data collected via a

widespread parent survey conducted in 2011. Findings will be incorporated over the next five years

with annual measures of parents and youth participating in transition services.

The community expertise we consulted consistently pointed to the following specific gaps in available

services that would improve health outcomes or experiences for CSHCN:

• Appropriate institutional care for children age 22 and beyond

• Therapeutic Day Care for children under age 5

• Summer camps for CSHCN and after school programs

• Better designed or coordinated transition services for youth to adult for both needed health

services and independence (i.e. employment, housing, etc.).


HSCPC developed and operated the Kids Infant Parents Program (KIPP) until 2001 at the request of the

DC Department of Health. It was a therapeutic day care program for CSHCN ages 0-4. HSCPC closed

the program because of the lack of adequate program funding from DC Medicaid for the medically

complex children that HSCPC serviced. Easter Seals and United Cerebral Palsy operate similar

programs in the DC metropolitan area. However, this is still a prominent need according to community

members and public health experts.

With reference to youth to adult transitions, HSCPC has participated with community agencies to

achieve safe transitions. However, the challenges of fragmented social services and lack of appropriate

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institutions for young adults remain. In addition, studies have indicated that transition planning, while

effective for CSHCN, requires extensive new funding or additional community resources 22. It may also

be addressed more effectively as part of an improved coordinated care or medical home effort (see next

section). For new services needed to improve health outcomes, the Hospital’s implementation plan

includes the following:

• Contact and collaborate with public DC and other funding agencies to determine the feasibility

of developing either a full day, after school, or summer program that addresses this unmet need

in the most effective manner. Maryland’s Needs Assessment has not selected this as a priority.

• Contact and collaborate with public DC and other community agencies to determine the

feasibility of developing a specialized group home for young adults either as a distinct unit part

of the hospital or at a separate community location.

Any practical outcomes of these collaborative efforts may be incorporated into a 5-year strategic plan

for the hospital.

Due to the complexity of services required for successful transition planning and implementation,

these services are not normal activities within institutional health provider systems. They are

historically in the domain of educational and social systems. The establishment of the National Youth

Transitions system by The HSC Foundation is intended to address these realities.

4. Barriers That Hinder Access to Needed Available Services

There are many barriers to quality care and outcomes for indigent patients that have been well

documented. They include the first three “need” categories defined for this CHNA (inadequate

insurance coverage, unavailable appropriate services, and lack of new services or workable service

approaches needed to improve care/outcomes). These barriers are much greater for the special needs

population because of the prevalence of poverty and limited education. Most CYSHCNs are poor

minorities living in poor communities with limited access to needed services and limited understanding

of how to navigate a complicated health care delivery system. In addition, CYSHCNs require more

services from more and various medical specialties.

The following was copied from an article in Pediatrics: “What Will Open the Doors for Children and

Youth with Special Health Care Needs from Traditionally Underserved Communities?”

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“The prevalence of these conditions of poverty undermines and complicates the ability and capacity of families to negotiate and coordinate so many service and care needs simultaneously, especially when resources are frequently organized in separate agencies that are not integrated. Agencies and resources are often limited by variable but ongoing financial constraints, often without the ability to develop an appropriate maintenance strategy plan.”22

That article goes on to describe the barriers in terms of “…high needs and demands, underreporting of

problems, limited family capacity, inadequate professional knowledge for a population that depends on

and interacts with the medical, education, and social systems in the community on a highly frequent

basis”22 .

We have yet to find workable solutions for these barriers after years of concerted wide spread

community and governmental efforts. However, the overall consensus seems to be a more “ideal”

medical home approach or “targeted care coordination” or both.

Ten medical experts we surveyed answered an open-ended question on what they thought the major

health concerns were for this population (Question 2, Appendix B). They answered increases in patient

medical risk and frequent relapses to acute care because of lacking family support, and lacking family

capacity to manage medically complex children. They specifically mentioned that progressive

respiratory diseases, diseases with physical impairments, and mental health diseases typically get worse

or take longer to care for because of these concerns or challenges.

The Medical Director of HSCPC and several others surveyed (Reference Appendix B) provided non-

prompted recommendations to improve health care outcomes for the CSHCN population that included

the following:

• Reduce service fragmentation through better clinical care coordination which will include better

and quicker provider team communication, transportation, and better data (Question 7)

• Family Outreach and training for families including in-home services, language services,

housing assistance, employment help (Question 7).

• More and better trained care managers (smaller case loads) to include integrated care services,

remote monitoring, community presence (Question 3)

• Better Care Coordination (Question 1)

• More and better care giver education to include resources sites, compliance incentives, and peer

support (Question 3), and

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• Improved provider education (including electronic directories and resource access) that results in

more proactive patient care (Question 3)

There were 46 responses to survey question 4 about the main reasons caregivers or patients do not seek

needed or recommended treatment. Thirty of the 46 responses were related to caregiver issues or

constraints:

• 16 answered “Lack of knowledge”

• 14 answers related to other caregiver issues: fear or burnout, social determinants (jobs, housing

issues), or cultural issues.

These survey responses from our community experts mirror published articles as well as public health

agency health needs assessments. The Intergovernmental Committee on Children and Youth with

Special Health Care Needs (ICCYSHCN) was created in October of 2009 in DC. The goal of

ICCYSHCN is to:

“…improve collaboration and communication among District agencies to ensure that CYSHCN and their families have access to a coordinated system of services through the life course. DOH intends to be the visible leader in supporting the coordination of the highest quality of care and services to CYSHCN population and their families through collaboration and facilitation of an easily accessible system of support and services. The group will be charged with recommending modifications to services and sharing expertise through collective action to maximize resources in support of children and families.” 6 Maryland identified Medical Home as a core outcome requirement for the CYSHCN population.

However they slipped from 57% participation to 47% participation between 2001 and 2006 citing the

following barriers to successful performance in this area (See Appendix D):

“Provider characteristics, including communication, empathy, paternalism, competence, and cultural sensitivity, lack of knowledge, skills and resources to implement the Medical Home; parent characteristics including lack of information, not prepared to effectively coordinate child’s care, isolation and lack of platform for education in Medical Home requirements and expectations, and care coordination; Care coordination agency fragmentation and lack of standards; lack of compensation for care coordination, non face-to-face care, and non-physician care; and seeming lack of interest in Medical Home on a statewide level.”9

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The Hospital has limited capacity to implement a Medical Home model given its delivery model. It

would also be difficult to facilitate coordinated care beyond what hospital patients needed during

admissions/registrations or discharge planning. These issues are better handled by sister organizations

HSCSN and the HSC Foundation whose missions more easily encompass these initiatives and stated

challenges. HSCPC can play more of a community-wide role as it pertains to parent education,

trainings, and empowerment. To address CHNA findings in this area, the Hospital will implement the

following strategies designed to reduce barriers to needed care by the CSHCN population:

1. Expand our parent training to include periodic classes and support groups for the community at

large. These may be held at the hospital or any community forum and will include help to

participants in successfully using other on-going support offered on-line. Some of this is already

being done by via HSC Foundation funding (see section D below).

2. Develop/Enhance an on-line tool to provide and support continuing caregiver education that may

also train parents on how to connect to a care coordinator, coach or other culturally sensitive

patient care navigator.

3. Participate in active community collaborations to improve medical homes including design of

data inputs, data sharing, data reporting, and expert medical treatment advice.

D. Summary and Conclusion

HSC Pediatric Center in collaboration with the HSC Healthcare System commissioned this

comprehensive health needs assessment to strategically guide future operations for the betterment of the

Community we serve. Based on the CHNA findings, HSCPC has adopted implementation strategies

designed to improve health care access, health outcomes, and meet other identified health care needs for

populations at high medical risk due to income and other related social factors. These implementation

plans are outlined in Table 10 below along with the assessed needs to which they correlate.

It is the mission of the HSC Healthcare System to ensure the highest possible quality care provision and

health outcomes for the chronically disabled child community. Therefore while the Hospital will

implement the specific plans below based on the CHNA, the HSC Healthcare System will continue with

community benefits activities described herein and embrace new activities to address services needed by

disabled populations per our mission.

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Table 10- HSCPC 2013 CHNA Implementation Plans

Assessed Need 2013 Implementation Plans Lack of insurance coverage for available services

1. Continue charity services at HSCPC for non-covered Medicaid services that are medically needy.

2. Continue to follow the specific community benefits requirements for non-profit hospitals which include financial counseling, uniform charging, and published charity care policies and annual amounts.

3. Continue charity services for any patient meeting the charity definition based on federal poverty guidelines.

Lack of available services due to provider availability or reasonably accessibility

1. Expand outpatient service capacity for improved timely access to needed care.

2. Determine whether there is a need for outpatient services at an off-site location and follow-through if feasible.

Needed Services not currently available that would improve overall health status or outcomes

1. Collaborate with DC and Maryland Medicaid Agencies to determine and then address needed therapeutic day care, after care, summer care, or other programs that are feasible.

Barriers that hinder access to services

1. Expand parent training to include periodic classes and support groups for the entire community served by HSC PC.

2. Maintain/Enhance an on-line tool developed to provide and support continuing caregiver education.

3. Work with community partners, as required, to define an effective Medical home model that may be tested for improved health quality and cost effectiveness.

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Acknowledgements and HSC Healthcare Board of Directors

Authors:

Frances Christmon, Vice President, SNCS

Ashley Garvin, Consultant, SNCS

Contributors:

Bruce Goldman, COO, HSC PC

John Mathewson, EVP, HSC Health Care System

Nancy Southers, VP Finance, HSC Health Care System

Danny Bellamy, COO, HSCSN

Joel Menges, President, SNCS

Nathaniel Feingold, Research Assistant, SNCS

HSC Pediatric Center Board of Directors

Thomas W. Chapman, President and CEO

John Mathewson, Executive Vice President

Margaret K. O’Bryon

Charlotte Collins

Miatta Tucker

Dianne Reynolds, MD

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References

1. Health Resources and Services Administration. Medically Underserved Areas & Populations (MUA/Ps). Washington, DC: Department of Health and Human Services, 1995.

2. Cohen, SB and W Yu. The Concentration and Persistence in the Level of Health Expenditures Over Time: Estimates for the US Population 2008-2009 Statistical Brief #354. Rockville, MD: Agency for Healthcare Research and Quality, 2012.

3. Community Benefit Reporting Guidelines and Standard Definitions for the Community. 2005.

4. Community Health Indicators for the Washington Metropolitan Region. A Regional Report for the Washington Metropolitan Region. Washington, DC: Metropolitan Washington Public Health Assessment Center, 2001.

5. Community Health Needs Assessment Survey: Dosher Memorial Hospital. 2011.

6. D.C. Department of Health, Community Health Administration (CHA). Title V Needs Assessment Executive Summary. Washington, DC: DC Department of Health, 2010.

7. Gresenz, CR, et al. Behavioral Health in the District of Columbia: Assessing Need and Evaluting the Current System of Care. Washington, DC: Rand Corporation, 2010.

8. Health Progress: Assessing Community Needs. 1994.

9. Health, Maryland Department of. Title V Maternal and Child Health Block Grant. Rockville, MD: Maryland Department of Health and Mental Hygiene, 2010.

10. Lewis, C, AS Robertson and S Phelps. Unmet Dental Care Needs Among Children with Special Health Care Needs: Implications for the Medical Home. American Academy of Pediatrics (2005): 426-431.

11. Lewis, CW. Dental Care and Children with Special Health Care Needs: A Population-Based Perspective. Journal of the Academic Pediatric Association (2009): 420-426.

12. McManus, M, et al. Pediatric Perspectives and Practices on Transitioning Adolescents with Special Needs to Adult Health Care. Washington, DC: The National Alliance to Advance Adolescent Health, 2008.

13. MH, Tang, et al. Medicaid managed care and the unmet need for mental health care among children with special health care needs. Health Serv Res (2008): 882-900.

14. Minihan, PM, A: Anderson, B Must and B Popper. Children with Special Health Care Needs: Acknowledging the Dilemma of Difference in Policy Responses to Obesity. Prev Chronic Dis 8.5 (2011).

15. Nageswaran, S. Respite Care for Children with Special Health Care Needs. Arch Pediatr Adolesc Med (2009): 49-54.

16. Oswald, DP, et al. Disparities in the Clinical Encounter: Virginia's African American Children with Special Health Care Needs. Pediatrics (2011): 1-8.

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17. Peters, CP. Children with Special Health Care Needs: Minding the Gaps. Washington, DC: National Health Policy Forum, 2005.

18. Porterfield, SL and McBride TD. The Effect of Poverty and Caregiver Education on Perceived Need and Access to Health Services Among Children with Special Health Care Needs. American Journal of Public Health (2007): 323-329.

19. Reinehr, T, et al. Obesity in Disabled Children and Adolescents: An Overlooked Group of Patients. Dtsch Arztebl Int (2010): 268-275.

20. The Medical Home. American Academy of Pediatrics (2002): 1-5.

21. Wang, G, BB McGrath and Watts C. Health Care Transitions among Youth with Disabilities or Special Health Care Needs (CSHCN): An Ecological Approach. Pediatr Nurs (2010): 505-550.

22. Chapman, T and Tait, Fan. What Will Open the Doors for Children and Youth with Special Health Care Needs From Traditionally Underserved Communities? Pediatrics (2010):126; S194-S196. 23. Connolly, J and Paradise, J, People with Disabilities and Medicaid Managed Care, Key Issues to Consider Kaiser Family Foundation's Commission on Medicaid and the Uninsured (2012)

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APPENDIX A – LIST OF COMMUNITY PARTICIPANTS

Organization Department or Agency name OR Database/Report reference

HSCSN Medical Director, Utilization Review

HSCSN Behavioral Health DirectorHSCSN Director of Care ManagementHSCSN Hedis and Quality

HSCSN DEVELOPMENTAL PEDIATRICIAN

HSCSN Executive Director ,DC Behavorial Health Assn.HSCSN Each of Five Team LeadersHSC PC Medical DirectorHSC PC VP, Patient Care ServicesHSC PC Director of TherapyHSC PC Director, Business OfficeHSC PC Director Inpatient Admissions

HSC PC Director Outpatient RegistrationsHSC PC COOHSC PC Director of HSCPC Education program

VP of Home Care

HSC PC Pediatrican and Medical Director of Complex Care,CNMC

HSC PC Assistant Medical Director,Hospitialist Program,HSCPC

HSC PC Physical Medicine physicianHSC PC Child Psychologist

MD Public Agency CNMC Maryland Specialty Pgm Coordinator - CNMC

DC Public Agency State Health Planning and Development Agency

DC Public Agency DOH Ctr for Policy Planning and Evaluation

MD Public Agency P.G. County DHR

MD Public Agency Acting Health Officer. PG County Health Department

MD Public Agency Office of Genetics and Children with Special Health CareNeeds

MD Public Agency Agency Chief, P.G. County Infants and Toddlers Program

HSC PC PMR physician - CNMC

HSC PC PMR physician - CNMC

HSC HC (Home Care)

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APPENDIX B – Survey Findings Summary

Q.1 – What is Most Needed to improve Overall Health Outcomes (8 multiple Choice)

Count

a Transportation

27

b After School Programs or Special School Programs

19

c More Mental Health Services including specialty mental health providers

27

d Summer Programs (for autistics in particular (1)) 4 e Better care coordination 21 f More specialty services for physically impaired (DME, equipment, developmental

pediatricians) 8

g Other: Home aides & home therapies 11 h Other: Transitioning programs 1

Q.2 – What are the Major Health Concerns (open question) Count

a Lack of training, employment and proper, affordable housing for young adults transitioning out of the program.

3

b Untreated Autism, ADHD, Depression, other mental health conditions 8

c Increases in patient medical risk and frequent relapses to acute care because of lacking family support, family capacity to manage medically complex children. Specifically, progressive respiratory diseases (asthma, obesity, physical impairment, mental health may worsen or take longer to care for.

10

d HIV and related 1

e Un treated Dental care needs 3

f Untreated or under treated preventive services and palliative care for chronic children age 0-4. (not enough PCPs trained or available to treat properly)

4

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Q.3 – General Recommendations to Improve Overall Health Outcomes (open question)

Count

a More and better trained care managers (smaller case loads) to include integrated care services, remote monitoring, community presence.

15

b More and better care giver education to include resources sites, compliance incentives, and peer support

6

c More community based services for children transitioning to adults 3

d Improved provider education (including electronic directories and resource access) that results in more proactive patient care

2

e More Medicaid Dentists & specialists (particularly Mental Health) accessible within the community

3

f Affordable child care and/or vouchers systems of reimbursement allowing families to continue to work

4

Q.4 – Main Reasons Treatment Not Obtained or Sought by Patients/Parents (8 multiple choice, select 1)

Count

a Lack of Knowledge 16

b Transportation/ Access to Services (no appointments, provider too far) 11

c Caregiver Burnout or Fear 6

d Multiple Social determinants – Lack of motivation for self-care, job and housing issues

6

e Lack of effective preventive health care services (clinical care management) 3

f Cultural or health beliefs 2

g Lack of insurance 2

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Q.5 – Additional Services or Changes to Existing Services to Close Quality Service Gaps (8 multiple choice, select multiple)

Count

a More and better (better managed) mental health services of all types 20

b Preventive Care Information and treatment to include weight management, cholesterol management, etc.

18

c HIV Treatment, prevention 14

d Substance Abuse 12

e Dental screenings, services 11

f Peer Support Services – including patient advocacy, caregiver support, etc. 5

g Other access to community providers in- county (PG) including medical home 2

h Urgent Care Centers 1

Q.6 Main Factor Affecting Quality of Health Care Patients Received

( multiple choice, select 1)

Count

a Language or Cultural Barriers 11

b Literacy – read and write 10

c Economics (including lack of insurance or insurance coverage for services) 9

d Lack of Education about care or health care systems (lack of advocacy) 6

e Lack of providers 1

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Q.7 Recommendations to Improve Community Collaboration that results in improved care access ( open question)

Count

a Reduce service fragmentation through better clinical care coordination which will include better and quicker provider team communication, transportation, and better data

5

b Family Outreach and training for families including in-home services, language services, housing assistance, employment help.

3

c Outreach to schools as a resource 1

d More Proactive efforts to bring pregnancies to term 1

Q.8 Identify Specific Conditions or Specialty Services Most Difficult to Find or Manage among this population ( open question)

Count

a Autism 13

b Behavioral Health – ADHD 4

c Physical Therapy 2

d Dental 1

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APPENDIX C - PROFILE OF "Key" PROVIDERS SERVING THE SPECIAL NEEDS CHILD POPULATION

provider type specialty (or general services) provided

loca

tion

(D

C, P

G,

MC

,NV

)

zip

code

Med

icai

d P

rovi

der

Acc

epti

ng n

ew

pati

ents

/res

iden

ts

Num

ber

of D

ays

unti

l N

ext

Ava

ilabl

e A

ppoi

ntm

ent

*

child group home med mgt, therapy,dev disabled PG 20743 Yes Yes 0

child group home Nursing and Rehabiliation center VA 22027 Yes Yes 0Child Psychiatrist Child Psychiatry DC 20010 N/A Yes 30+Child Psychiatrist Neuropsychology MC 20854 Yes Yes 120

Child Psychiatrist Child and Adolescent Psychiatry DC 20008 N/A 30+

Child Psychiatrist Child and Adolescent Psychiarty MC 20814 N/A 30+

Child Psychiatrist Child and Adolescent Psychiatry DC 20010 Yes Yes 56

Child Psychologist Clinical psychology MC 20852 No Yes 15Child Psychiatrist Psychology PG 20761 No 150Child Psychiatry & child and adult mental health assessments and Psychology therapies PG 20706 Yes Yes 0-14Developmental Peds. Developmental Behavorial DC 20010 Yes No

Developmental Peds. Pediartics Pulmonology DC 20010 Yes Yes 60

Developmental Peds. Pediartics Pulmonology AAC 21401 Yes Yes 60Developmental Peds. Developmental Behavorial MC 20853

Developmental Peds. Developmental Pediartics PG 20707 Yes Yes 30-60

Developmental Peds. Neonatal-Perinatal DC 20032PMR Center Post-Acute Care DC 20010 yes Yes

PMR Center PT,ST,OT for Children, No OPED BC 21209 No Yes 30PMR Center OPED,ST,OT,PT BC 21205 Yes Yes

Not at the 30

PMR Center Pediartics Special Need Rehab VA 22903 Yes moment 90PMR Practice Pediartics Special Need Rehab DC & VA 20010 Yes Yes 71 Residential Treatment Community Based Residential Treatment DC 20020 Yes Yes 7

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APPENDIX D -Maryland’s performance, associated issues, strengths, and barriers to progress on core outcomes for CYSHCN9

Core

Outcomes Title V

Performance 2001

Maryland (National)

2005-06 Maryland (National)

Issues Strengths in Maryland

Barriers in Maryland

Families partner in decision making

Percent of children with special health care needs (CSHCN) age 0 to 18 years whose families partner in decision making at all levels and are satisfied with the services they receive.

68.1 (57.5)

Maryland ranked 2nd

in the nation

54.8 (57.4)

Maryland ranked 42nd in the nation

Families with CSHCN in one or more of the following subgroups were the least likely to report feeling like partners or to be satisfied with care: Hispanic; family income less than 200% FPL; whose conditions have a greater impact on the child’s daily functioning; rural; and those with mental health issues.

Willingness of stakeholders to work together; existing models of partnerships; strong families; availability of data.

Inadequacies in professional and family training opportunities; support for culturally and linguistically competent supports and services family and professional supports including time, reimbursement, and financial support; County and regional variances; lack of value for family wisdom, experiences, expertise and knowledge; and existing partnerships are not consistently implemented across systems statewide.

Medical Home

Percent of CSHCN age 0 to 18 years who receive coordinated, ongoing, comprehensive care within a medical home

56.3 (52.6)

Maryland ranked

10th in the nation

45.6 (47.1)

Maryland ranked 38th in

the nation (2005-06 data

cannot be compared to

2001 data due to

significant changes in how this indicator is

derived.)

Families with CSHCN in one or more of the following subgroups were less likely to report care consistent with a medical home: Hispanic and African American non-Hispanic; family income less than 200% FPL; age 12-17 years; with public insurance only; with one or more periods of being uninsured in a year; or with one or more emotional, behavioral, and developmental issues.

Ongoing partnerships and relationships among stakeholders; strong interest among stakeholders in promoting the Medical Home model; current project in Baltimore City that is building medical home capacity in pilot practices

Provider characteristics including communication, empathy, paternalism, competence, and cultural sensitivity, lack of knowledge, skills and resources to implement the Medical Home; parent characteristics including lack of information, not prepared to effectively coordinate child’s care, isolation and lack of platform for education in Medical Home requirements and expectations, and care coordination; Care coordination agency fragmentation and lack of standards; lack of compensation for care coordination, non face-to-face care, and non-physician care; and seeming lack of interest in Medical Home on a statewide level

Adequate Insurance

Percent of CSHCN age 0 to 18 years whose families have adequate private and/or public insurance to pay for the services they need

67.5 (59.6) Maryland ranked 5th in the nation

65.5 (62.0) Maryland ranked 14th in the nation

Families with CSHCN in one or more of the following subgroups were less likely to report having adequate insurance: Hispanic; family income less than 200% FPL; with both private and public insurance; or with above routine need/use of services.

MCHIP expansion; Medicaid waiver for children with autism; Medicaid buy-in for employed individuals with disabilities; Kids First Act

No comprehensive plan to address the needs of how services for CYSHCN are paid for; state budget cuts; long waiting lists for waiver programs; large disparity in the availability of needed providers in rural vs. urban areas; limits on scope of benefits; difficult to navigate health plans; erosion of employer-based benefits; lack of care coordination; lack of clarity about eligibility for services; and insurance not keeping pace with technological advances in therapies or Durable Medical Equipment

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Core Outcomes

Title V Performance

2001 Maryland (National)

2005-06 Maryland (National)

Issues Strengths in Maryland

Barriers in Maryland

Community- Based, Easy-

to-use Systems

Percent CSHCN age 0 to 18 years whose families report the community-based service systems are organized so they can use them easily

70.6 (74.3)

Maryland ranked 42nd in

the nation

89.3 (89.1)

Maryland ranked 26th in

the nation (cannot be

compared to 2001 data)

Families with CSHCN in one or more of the following subgroups were less likely to report ease of use: Hispanic; those with Functional limitations; or with one or more emotional, behavioral, and developmental issues.

There are many resources and services for families as well as good potential for infrastructure to improve these services.

Redundancy (ex: multiple entities offer case management); fragmentation; lack of acknowledgement of disparities; lack of knowledge among care providers of resources and services; turf issues among agencies.

Youth Transition

To Adulthood

Percent of youth with special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence

5.8 (these data

deemed unreliable

due to sample size and other concerns)

37.4 (41.2)

Maryland ranked 42nd in

the nation (cannot be

compared to 2001 data)

Families with CSHCN in one or more of the following subgroups were less likely to report receiving transition services: family income less than 200% FPL or those with public insurance only.

Maryland currently has many government and parent-led activities focused on improving transition

The current status of Transition to Adult Services in Maryland is characterized by fractured activities with no common end. Despite the activities focused on Transition in Maryland (see below), the state continues to lack a clearly defined, comprehensive, coordinated, community based, culturally competent, collaborative, youth/family centered system of care to facilitate success in transition from pediatrics to adult-based health care. This issue is compounded by the problem of this age group accessing their own health insurance

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