Eastern Shore: St. Mark s United Methodist Church Easton, MD June 12, 2012

Transcription

1 Eastern Shore Setting Priorities for Children and Youth with ASD and DD Data Handout This document is intended to accompany the Population Overview and Data presentation in the morning. We ll talk about: -Prevalence -Demographic and other characteristics -Data around each of the top 10 needs for the Eastern Shore identified through stakeholder poll **Note: various data sources: -National Surveys ( /2007) National Survey of Children with Special Health Care Needs (NS-CSHCN); National Survey of Children s Health (NSCH) Maryland Parent Survey -Maryland State Department of Education (MSDE) Special Education Census/2009 Maryland Autism Services Survey -Maryland Center for Developmental Disabilities (MCDD) Focus Groups (2011) -Maryland Commission on Autism (MCA) Listening Session (2010) -The Parents Place of Maryland (PPMD)/Office for Genetics and Children with Special Health Care Needs (OGCSHCN) Parent Focus Groups (2011) PREVALENCE Prevalence among all children: Developmental Disabilities The 2007 National Survey of Children s Health estimated that almost 28% of Maryland children aged 4 months to 5 years are at moderate or high risk for developmental delay, higher than the nation as a whole (26.4%). Autism Spectrum Disorders (2008) (Source CDC Autism and Developmental Disabilities Monitoring Network) Nationally: 1.13% Nationally, average prevalence of ASD increased by 78% per 1,000 children in 2002; 11.3 per 1,000 children to In Maryland: 1.24% 1

2 Prevalence within CYSHCN population in Maryland (Source: NS-CSHCN): Prevalence of CSHCN aged 0-17 years in Maryland is 15.7% (~211,000 children ages 0-17 or 244,000 aged 0-21). Within this population, 31.4%: currently have ADD or ADHD 14% currently have behavioral or conduct problem 13.1% currently have developmental delay 1.2%* have Cerebral Palsy 0.7%* have Down Syndrome 7.3%: currently have ASD From 2010 Maryland Parent Survey: Number of Survey responses- at least one child Region w/asd Statewide Capital Central Eastern Shore Southern Western* 7 42 Unknown 2 4 Number of Survey responses- at least one child w/shcn 2

3 It is important to note that this data source cannot be considered to be representative of the target population because the sampling method used for the survey was not randomized. For example, this data set is more representative of white families of children with ASD and higher-income families of children with ASD than of lower-income families. *Also important, we did not have enough responses from Western Maryland to do a sub-analysis of the data for families with at least one CYSHCN with ASD, so we will rely on results from a focus group with Western Maryland parents of CYSHCN with ASD/DD as well as an analysis of the 42 families of CYSHCN from the Parent Survey. Prevalence within Special Education population in Maryland The rates of special education students who are coded with autism have increased over a period of ten years. The figure above displays the statewide rates of special education students ages 3 to 21 who are coded with autism, and the rates for the Eastern Shore region and its individual counties, from 2000 to Statewide, the rate of students with autism has quadrupled, from around 2% (2,304 students) to almost 9% (8,828 students) over this ten year period. In 2010, the state had its highest rate at 8.6 % which corresponds to 8,828 students who were coded with autism and receiving special education and related services. Though as a region the Eastern Shore has a rate lower than the statewide average, the region did see an increase in students receiving special education services and coded with autism, from 1.2% (102 students) in 2000 to 6.7% (507 students) in Within the region in 2010, Dorchester County had the highest rate at 9.0% followed by Wicomico (7.6%) and Caroline (7.3%) counties. 3

4 The figure above shows statewide rates of special education students ages 3 to 21 years coded with intellectual disability, and the rates for the Eastern Shore region and its individual counties from 2000 to There is variation in the rates throughout the state during this time period. Statewide there was on overall decline during the 10 year period. Among regions of the state, the Eastern Shore had the largest decrease over time. The region had 760 students (8.6%) in 2000 and 450 students (5.9%) in Dorchester County currently has the highest rate of students coded with intellectual disability in the region, at 16.1% (70 students) in 2010; Queen Anne s County has the lowest rate at 2.2% (21 students.) Within this region, the greatest decrease occurred in Talbot County with 81 students (16.1%) coded with intellectual disability in 2000 to 35 students (9.0%) in Wicomico County had a similar decrease with 227 students (13.3%) in 2000 to 112 students (6.6%) in

5 Percentage The rates of Maryland students coded with developmental disability ages 3 to 9 years from 2000 to 2010 are displayed above. It is important to note that under the coding of developmental delay children can only be served under this category until 7 years of age, when they must receive a more specific diagnosis for continued receipt of special education services. As a region, the Eastern Shore has seen a steady increase in the rate of children coded with developmental delay, though the increase has been at a slower rate than the overall statewide increase. DEMOGRAPHIC, SOCIOECONOMIC (SES) AND OTHER CHARACHETERISTICS Some general SES data on the region: Poverty rates: 14.0% 12.0% 10.0% 8.0% General Poverty Rates - Eastern Shore Region Eastern Shore The Eastern Shore has a higher rate of poverty than the state as a whole. The poverty rate increased from under 10% in 2000 to almost 12% in % Statewide 4.0% 2.0% 0.0% : Year 5

6 % reporting receiving nutrition assistance Percentage Child Poverty Rates - Eastern Shore Region 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% Statewide Caroline Cecil Kent Queen Anne's Talbot Dorchester Somerset Wicomico Worcester 0.0% Year Source: U.S. Census 2010 Small Area Income and Poverty Estimates Socioeconomic Status: Maryland children with ASD receiving government-sponsored nutritional assistance % 60% 59.5% 50% 40% 30% 20% 10% 21.1% 9.9% 14.8% 7.1% 21.0% 10.3% 25.3% 21.2% 9.2% 6.0% 0% Statewide Capital Central Eastern Shore Region Southern Western With at least one child with ASD With at least one child with any SHCN As a proxy for socioeconomic status, respondents were asked whether each of the children in their family received any type of government-sponsored nutritional assistance. The figure above shows that within this data set, statewide and across regions within the state families of children reported to have ASD are less likely than the families of children with any SHCN to receive family income-related nutrition assistance. For example, this data set is more representative of white families of children with ASD and higher-income families of children with ASD than of lower-income families. It s important to remember that the Eastern Shore had a smaller number 6

7 of respondents to this survey (79 out of 773 respondents) than some other regions, so the percentages we see here and in other graphs using this data source are going to be sensitive and somewhat exaggerated when compared to Central and Capital regions; however we know from the earlier poverty data, which is representative of the region, that the Eastern Shore has high poverty rates. The same is true for the figure below, showing the difficult paying for basic needs among families of CYSHCN in Maryland. Difficulty Paying for Basic Needs among Families of Children with ASD and Families of Children with any SHCN Source: NS-CSHCN Race/Ethnicity: From the 2009/2010 NS-CSHCN: 7

8 Number of children From the 2010 Maryland Parent Survey: No matter what the data source, the majority of CYSHCN are white, non-hispanic. The 2010 Maryland Parent Survey seems to over-represent white CYSHCN and under-represent Hispanic CYSHCN. Comparing race/ethnicity of children with ASD in the 2010 Maryland Parent Survey, white children are over-represented, black and Hispanic children are under-represented. ASD: Age and Gender Source: 2010 Maryland Parent Survey to 2 3 to 5 6 to to to 21 Over 21 Age (years) SHCN ASD Female Male Unanswered SHCN ASD The majority of children with ASD represented in the survey were between the ages of 6 to 17 years (74.3%); 13.7% were between the ages of birth to 5 years, and 11.9% were ages 18 to 26 years. There were significantly more male children (76.7%) than female children (20.2%) with ASD in the survey sample. 35% 30% 25% 20% 15% 10% 5% 0% Experience with Challenging Behaviors among CYSHCN with ASD on the Eastern Shore 33.3% 30.4% 30.4% 21.2% Depression Anger/Conflict management 24.2% 20.3% Bullying 18.2% 17.7% Source: 2010 Maryland Parent Survey Peer Pressure 15.2% 12.7% Overweight/Obesity 8 Type of Challenging Behavior or Experience

9 When examined regionally, some variation was seen within families of children with ASD, with Southern Maryland and the Eastern Shore regions reporting higher incidences of challenging behaviors than other areas of the state. For example, Southern Maryland (30.0%) and Eastern Shore (33.3%) families were more likely to report issues with anger/conflict management than other regions, while Central Maryland (19.0%) families were far less likely to report issues with that behavior. Southern Maryland (28.0%) and Eastern Shore (24.2%) families also reported higher rates of experience with bullying than the statewide rate. PRIORITY NEEDS AND DATA 48% 36% 32% 32% 28% 28% 28% Other needs: Reliable information; legal assistance related to special needs trusts and medical consent; transportation 24% 20% PRIORITY 1: ACCESS TO NEEDED THERAPIES: 48% of ASD/DD Poll respondents representing the Eastern Shore ranked Access to needed therapies (behavioral, speech/language, occupational and physical) in their top 5 priorities MCDD, MCA findings There are not enough OT, speech/language, PT and behavioral therapy providers on the Eastern Shore. Waiver service coordinator from Wicomico County: need to increase the workforce of available service providers on the Shore and provide ongoing training for those already in service 9

10 Advocacy Health Services Child care Hearing services Vision services Occupational therapy Physical therapy Speech and/or language Psychological services Assistance/training w/self-care skills/ Special education Info about child's disability Info about where to get services Info about legal rights Parent support groups Sibling support groups Transportation Mobility services Transition services Counseling services Director of Special Education for Wicomico County: only one approved service provider in Wicomico County; families have to travel long distances to seek services and supports, costing families a great deal of time and money (MCA) All found that inadequate insurance coverage is a major barrier. services not covered or inadequately covered by insurance noted most frequently were: therapies (such as speech therapy and behavioral therapies (2010 Maryland Parent Survey) Health insurance companies typically disputed whether the service or care was necessary or covered the only providers available to perform the service did not accept their children s health insurance something was only partially covered by insurance. (OGCSHCN/PPMD Focus Groups) All found that inadequate insurance coverage is a major barrier. services not covered or inadequately covered by insurance noted most frequently were: therapies (such as speech therapy and behavioral therapies (2010 Maryland Parent Survey) Health insurance companies typically disputed whether the service or care was necessary or covered the only providers available to perform the service did not accept their children s health insurance something was only partially covered by insurance. (OGCSHCN/PPMD Focus Groups) Need for Services among Families on the Autism Registry and Families Receiving Autism Waiver Services 100% 80% 60% 40% 20% 0% Registry Waiver 10

11 Source: MSDE 2009 Maryland Autism Services Survey The 2009 Maryland Autism Services Survey (MASS) compared outcomes for families receiving services through the Autism Waiver to outcomes for families waiting for services on the Autism Waiver Registry and found that Waiver recipients generally reported lower rates of needs for services and reported much higher rates of service adequacy than did the families waiting on the Registry (not receiving services through the Waiver.) Both groups reported very high rates of need for special education, speech and language services, and occupational therapy. There were several types of services that both Registry and Waiver families reported that they get some, but not enough, of the service most frequently in both groups was for speech and/or language services (Registry 74%; Waiver 61.4%), followed by information about where to get services (Registry 64.5%; Waiver 58%), and occupational therapy (Registry 61.8%; Waiver 57.4%). Core Outcomes Easy-to-use community based services and adequate insurance and financing are key components of an effective system of care for CYSHCN with ASD or other DD. Adequate Insurance: 54.4% with E/B/D issues had adequate insurance and financing (compared to 65% without E/B/D issues) ETUCBS: 51.3% with E/B/D issues had community-based, easy-to-use services (compared to 71.9% without E/B/D issues) 44.2% of CYSHCN in Maryland receive care in a medical home model; just 25.7% among those with E/B/D issues 11

12 PRIORITY 2: EASY TO USE COMMUNITY-BASED SERVICES 36% of ASD/DD Poll respondents representing the Eastern Shore ranked Needed services are community-based and easy to use in their top 5 priorities Main issues: -Uneven distribution of providers -Insurance access barriers (remember barriers from access to needed therapies?) -Transportation barriers -System navigation barriers MCDD, MCA, OGCSHCN/PPMD findings All found that there are not enough of any types of needed services on the Eastern Shore. MCA: Difficult to locate and access services outside of the school system; difficult for families and school systems to find services necessary to participate in education (assessment, assistive tech, augmentative communication, and other supports); need for more collaboration among service providers and school systems, perhaps through combined training and professional development opportunities Dir. Of Sp. Ed. Wicomico County feels transportation services or reimbursement for transportation to approved Autism Waiver Service Providers to bring them to the Shore. (MCA; Autism Waiver Service Coordinator and Dir. Of Sp.Ed) MCA: Difficult to locate and access services outside of the school system; difficult for families and school systems to find services necessary to participate in education (assessment, assistive tech, augmentative communication, and other supports); need for more collaboration among service providers and school systems, perhaps through combined training and professional development opportunities Dir. Of Sp. Ed. Wicomico County feels transportation services or reimbursement for transportation to approved Autism Waiver Service Providers to bring them to the Shore. (MCA; Autism Waiver Service Coordinator and Dir. Of Sp.Ed) OGCSHCN/PPMD: Need for local community-based services, including evaluation and treatment, after school programs and camps. Local Health Dept. Rep, Eastern Shore MCDD: Lack of knowledge and reliable information disseminated to family members/caregivers of people with DD; this interferes with easy access to community services 12

13 % famiiles traveling more than 50 miles for child to see a specialist Transportation Transportation is a major barrier to accessing services Eastern Shore has costly public transportation, limited routes and long waiting periods due to its rural geography; as a result this prevents people with DD from accessing health care services. Eastern Shore families are far more likely to have to travel 50+ miles than are families in Southern, Central or Capital regions; In every data source consulted for this needs assessment, transportation and travel to medical appointments for Eastern Shore families were repeatedly and consistently identified as a major barrier to accessing needed medical, specialty, and therapeutic care for children with ASD and other DD 90% 80% 83.3% 70% 60% 50% 56.5% 54.2% 51.2% 52.5% 40% 30% 20% 10% 23.2% 19.9% 8.8% 8.1% 7.9% 5.4% 0% Statewide Capital Central Eastern Shore Region Southern Western With at least one child with ASD With at least one child with any SHCN Source: 2010 Maryland Parent Survey Though a majority (76.8%) of families of children with ASD report traveling 50 miles or less for specialty care, over 23% report having to travel over 50 miles. Regionally, families in Western (83.3% any SHCN) and Southern (51.2% ASD; 52.5% any SHCN) Maryland and the Eastern Shore (56.5% ASD; 54.2% any SHCN) are far, far more likely to have to travel greater distances for specialty care than are families in Capital and Central Maryland. In every data source consulted for this needs assessment, transportation and travel to medical appointments for families from the Southern, Western, and Eastern Shore regions of the state was repeatedly and consistently identified as a major barrier to accessing needed medical, specialty, and therapeutic care for children with ASD and other DD. 13

14 Navigating the System- when Maryland families try to get care for their children with E/B/D issues, they face difficulties with: Source: ( NS-CSHCN) Core Outcome: Easy-to-use community-based services are a key component of an effective system of care for CYSHCN with ASD or other DD 65.1% of CYSHCN in Maryland have community-based services that are easy to use; just 51.3% among those with E/B/D issues PRIORITY 3: ACCESS TO PRIMARY AND SPECIALTY HEALTH CARE 32% of ASD/DD Poll respondents representing the Eastern Shore ranked access to primary and specialty health care in their top 5 priorities Issues: Uneven distribution of providers Limited specialists in the midshore region Waiting lists to access a specialists 2 hrs away is 6 months and longer, once the family has convinced the PCP of a concern. Travel involves a full day and is not conducive to reliable testing once the child arrives at the destination. Local Health Dept. rep, Eastern Shore Many parents said that satellite clinics of needed specialties as well as local offices for certain providers used to be available in their areas of the state but now are not (OGCSHCN/PPMD) Insurance/eligibility barriers Denied claims/inadequate coverage Providers don t accept MA or other types of insurance 14.6% of CYSCHN with E/B/D issues have delayed/unmet health care needs due to eligibility problems ( NS-CSHCN) Transportation barriers 56.5% of Eastern Shore families of children w/asd travel 50+ miles to see needed specialists (2010 Maryland Parent Survey) 14

15 Young adult with autism recalls that growing up on the Eastern Shore, all of his physicians were on the Western Shore, requiring a lengthy commute to and from their offices (MCA) *PDFs of these maps are available at under Maryland Maps 15

16 % reporting delayed or unmet need Service Strength on the LES: Peninsula Regional Medical Center (PRMC) is a strength on the Lower Shore they have pediatric subspecialty clinics (dermatology, cardiology, endocrinology; lost neurology), located in Wicomico County. However, there is a months-long waiting list for appointments, and the clinics are only once per month, which is a real challenge, so most families who need care and who can afford it travel over the bridge for services. The 3 lower counties are sharing a dental clinic for oral surgery at PRMC, this is an up and coming clinic and people are excited. Need for Medical Services among Maryland Children and Youth with ASD 50% 40% 30% 20% 27.2% 27.4% 25.1% 23.9% 18.4% 19.8% 24.2% 21.7% 16.2% 40.8% 30.6% 28.6% 37.0% 38.2% 35.3% 28.3% 20.7% 10% 0% Statewide Capital Central Eastern Shore ` Southern Western Region Mental Health Dental Medical Care Source: 2010 Maryland Parent Survey Core Outcomes: Access to medical home, early and continuous screening, easy-to-use community-based services, and adequate insurance and financing are key components of an effective system of care for CYSHCN with ASD or other DD PRIORITY #4: YOUTH TRANSITION TO ADULTHOOD 32% of ASD/DD Poll respondents representing the Eastern Shore ranked Youth Transition to Adulthood in their top 5 priorities MCA and MCDD Findings: The collaborative transitioning program is working well and catering to the needs of youth and children with DD; however for those not involved, there is not timely information about the transitioning youth period (MCDD) 16

17 % reporting occurrence of specific transition planning activity The sudden transition from intensive support through special education and school to very little supports for transition to community living causes a big disruption in services and supports, making transition particularly difficult for youth and families (MCA) Transition Indicators Maryland and Eastern Shore 70% 60% 50% 40% 30% 20% 10% 0% 24.4% 53.7% 56.4% 17.4% 46.6% 53.9% Adult Doctor Discussion Adult Health Insurance Transition Planning During IEP Meeting Type of transition-related planning activity Statewide Eastern Shore Source: 2010 Maryland Parent Survey Among respondents who have a YSHCN ages 13 years or older with ASD, 14.5% report that any of their child s health care providers have discussed having their child see a doctor who treats adults (compared to 17.4% of respondents with children with any SHCN); 39.8% have considered how to obtain or keep health insurance coverage for their child as they become an adult (compared to 46.6% with any SHCN); and 57.9% report having participated in transition planning as part of their child s IEP process (compared to 53.9% with any SHCN). Of those families who did participate in the development of a transition plan for their child, families of children with ASD are slightly more likely to report that the transition plan was specific to their child s needs and preferences (42.2%) than are families of children with any SHCN (39.1%), and are slightly less likely to report that they are satisfied with the transition services provided (26.3%) than are families of children with any SHCN (28.0%). Core Outcome Youth transition to adulthood is a key component of an effective system of care for CYSHCN with ASD or other DD. Only 36.8% of CYSHCN in Maryland are receiving all necessary services for successful transition; just 28% among those with E/B/D issues. 17

18 Other Disparities: Subgroups of YSHCN who are far less likely to receive the services necessary for successful transition are: YSHCN without a medical home (27.5% compared to 52.2% with a medical home) African American YSHCN (27.1% compared to 44.1% among white YSHCN) YSHCN without adequate insurance (30% compared to 43.9% YSHCN with adequate insurance) Priority #5: DEVELOPMENTAL SCREENING AND DIAGNOSTIC SERVICES 28% of ASD/DD Poll respondents representing the Eastern Shore ranked developmental screening and diagnostic services in their top 5 priorities OGCSHCN/PPMD and MCA findings: Some pediatricians are slow to address parental concerns; PCPs do not all understand the importance of early intervention; not enough diagnosticians on the Shore (OGCSHCN/PPMD Stakeholder Poll) There is intense interest on the part of pediatricians in this issue. Many of us, but not all, have implemented formal developmental screening. However, our frequent cry is What do we do when we identify a child with developmental needs? " Eastern Shore pediatrician Eastern Shore region needs better-trained pediatricians for screening and referrals for medical, mental health, and other treatments (MCA) Maryland Commission on Autism s Conceptual Model Linking Systems of Care and Communities of Care 18

19 Developmental screening and diagnosis data: Almost 28% of Maryland children aged 4 mths - 5 yrs are at moderate or high risk for developmental delay BUT only 22% of families report that their child aged 10 mths - 5 yrs received a standardized screening for developmental or behavior problems; 46% report that they were not asked by their providers if they had concerns about their child s learning, development, or behavior in the past year (National Survey of Children s Health 2007) 81.2% of CYSHCN in Maryland are screened early and continuously ( NS- CSHCN) Autism and Developmental Disability Monitoring Network (ADDM) Data: Core Outcomes: Median age of earliest Combined 14 Maryland ASD diagnosis for: ADDM sites Autistic Disorder 48 months 59 months ASD/PDD 53 months 67 months Asperger Disorder 75 months 79 months *Diagnostic information obtained from evaluation records may not capture the exact age of each child s earliest diagnosis; there is some instability of diagnostic subtypes over time. Early, continuous screening and access to medical home are key components of an effective system of care for CYSHCN with ASD or other DD 81.2% of CYSHCN in Maryland are screened early and continuously 44.2% of CYSHCN in Maryland receive care in a medical home model; just 25.7% among those with E/B/D issues PRIORITY # 6: MENTAL HEALTH TREATMENT AND SERVICES 28% of ASD/DD Poll respondents representing the Eastern Shore ranked Mental health treatment and services in their top 5 priorities 19

20 What? o A HPSA is a geographic area, population group, or health care facility (either Federal and/or State correctional institutions or public and/or non-profit medical facilities) that has been designated by the Federal government as having a shortage of health professionals. There are three categories of HPSAs: primary care (shortage of primary care clinicians), dental (shortage of oral health professionals), and mental health (shortage of mental health professionals). How o HPSAs are designated using several criteria, including population-to-clinician ratios. This ratio is usually 3,500 to 1 for primary care, 5,000 to 1 for dental health care, and 30,000 to 1 for mental health care. Why o HPSA designations make places eligible for certain federal programs, including J1 Visa Waiver, National Health Services Corps, LARP, and Enhanced Medicare and Medicaid reimbursement. 20

21 Eastern Shore Findings from MCA and OGCSHCN Lack of existing accessible services for mental health (MCA) Mobile mental health crisis unit on the Eastern Shore is great but it has too large an area to cover, isn t fast enough in an emergency; can take up to 2 hours to respond to a crisis (OGCSHCN) Core Outcomes: Access to medical home, Early and continuous screening, And easy-to-use community-based services are key components of an effective system of care for CYSHCN with ASD or other DD PRIORITY #7 ACCESS TO CHILD CARE AND RESPITE CARE 28% of ASD/DD Poll respondents representing the Eastern Shore ranked Access to child care and respite care providers who are competent and comfortable with caring for children with ASD and other DD in their top 5 priorities Findings from MCDD and MCA: o MCDD found that, on the Eastern Shore, respite through LISS funds to attend summer camps such as Camp Fairlee Manor through the Easter Seals program are helpful and accessible. o MCA found that there is a need to expand state and local (on the Eastern Shore) child care advocacy programs to support families in securing child care so that they can continue to work; also a need to increase inclusive child care opportunities for children Maryland and Eastern Shore Family Support Needs among CYSHCN 60% 50% 40% 48.1% 36.7% 30% 25.3% 20% 13.9% 15.2% 13.9% 10% 0% 49.9% 28.7% 24.9% 35.2% 21.2% 17.9% Finding services for their children Parent support group information Child care Respite care Diet/Exercise for their children Type of Support Service Needed Nutrition for their child Statewide Eastern Shore Source: (2010 Maryland Parent Survey) 21

22 Core Outcome o Easy-to-use community-based services are a key component of an effective system of care for CYSHCN with ASD or other DD o 65.1% of CYSHCN in Maryland have community-based services that are easy to use; just 51.3% among those with E/B/D issues PRIORITY #8 FAMILY TRAINING AND EDUCATION 24% of ASD/DD Poll respondents representing the Eastern Shore ranked family training and education in their top 5 priorities Registry Families Waiver Families (Source: 2009 Maryland Autism Services Survey) Important topics for training include: How to navigate the special education system and process How to navigate the health care system How to navigate insurance claims appeal process How to access needed primary and specialty health services legal assistance related to special needs trusts and medical consent Youth transition to adulthood Information is powerful. Family support networks are a great vehicle for information and support. Advocacy organization representative, Eastern Shore Core Outcomes: 22

23 Family-professional partnerships, and easy-to-use community-based services are key components of an effective system of care for CYSHCN with ASD or other DD PRIORITY #8: FAMLY-PROFESSIONAL PARTNERSHIPS 25% of ASD/DD Poll respondents representing the Eastern Shore ranked family professional partnerships in their top 5 priorities High Need for advocacy services among families on the autism registry (81.4%) and families receiving autism waiver services (72.3%) in Maryland Among those who needed advocacy services: Registry Families Waiver Families (Source: 2009 Maryland Autism Services Survey) Statewide Family Support Needs among CYSHCN Families Statewide Family Satisfaction with Support Received 23

24 Source: (2010 Maryland Parent Survey) Eastern Shore Data from 2010 Maryland Parent Survey Level of Satisfaction with CYSHCN Medical Care Very Satisfied Somewhat Satisfied Have not received medical care in the Somewhat Very last 12 Dissatisfied Dissatisfied months Statewide 47.2% 39.7% 9.0% 3.5% 0.6% Capital 42.9% 45.5% 10.3% 1.3% 0.0% Central 50.1% 37.7% 8.5% 3.4% 0.3% Eastern Shore 40.0% 41.4% 11.4% 4.3% 2.9% Southern 39.4% 39.4% 10.6% 9.1% 1.5% Western 64.1% 30.8% 2.6% 2.6% 0.0% Family Need for and Satisfaction with Special Education Services on the Eastern Shore 70% 60% 50% 40% 30% 20% 10% 0% 54.4% 27.8% 53.2% 45.6% 53.8% 29.5% 61.6% 35.8% 6.2% An evaluation from his or her school 8.9% Tutoring Speech/OT/PT Counseling Assistive Technology Type of Support Service Needed Statewide Eastern Shore 24 Source: 2010 Maryland Parent Survey

25 Indicators Used to Measure Partnership and Care Satisfaction Maryland Families of CYSHCN with E/B/D Issues: 59.3% meet Core Outcome #1 Sub-indicators: 78.6% health providers usually or always make parents feel like partners; 54.1% parents are very satisfied with communication among child s doctors and other health care providers when needed for care coordination 37.1% parents are very satisfied with communication between doctor and school, when needed Core Outcome: Among CYSHCN in general Maryland fares somewhat poorly (69.3%) on this outcome compared to other states, ranking 37th in the nation; among those with E/B/D issues, 59.3% (compared to 61.5% nationally) are successfully achieving this outcome. Other Disparities: Subgroups of CYSHCN who are far less likely to feel like partners in their child s care are: Poorest (0-99% FPL) CYSHCN (42.8%) CYSHCN without a medical home (53.8%) Hispanic CYSHCN (53.5%) CYSHCN with functional limitations (58.8%) PRIORITY #10 ADEQUATE HEALTH INSURANCE AND FINANCING 20% of ASD/DD Poll respondents representing the Eastern Shore ranked All families of children with ASD or other DD have adequate private and/or public insurance to pay for the services they need in their top 5 priorities Uninsurance among Maryland CYSHCN according to two different data sources: National Survey of Children with Special Health Care Needs % of Maryland CYSHCN without insurance increased in ; still less than nationwide % CSHCN % CSHCN without insurance at some point during the last year NS-CSHCN Year Maryland Nationwide 2010 Maryland Parent Survey Reported rates are higher than in NS- CSHCN (Maryland Parent Survey is not representative BUT shows regional variation) Eastern Shore uninsurance rates for CYSHCN were much higher than statewide average Priority: Adequate Insurance and Financing 25% 20% 15% 10% 5% 0% Maryland CYSHCN without insurance at some point during last year 12.7% 15.1% 10.3% 20.0% Statewide Capital Central Eastern Shore 13.0% 12.5% Southern Western Region Source: 2010 Maryland Parent Survey 25

26 ADEQUACY of Insurance (Eastern Shore) (with private insurance) Impact on Families: 26

27 Among Maryland families of CYSHCN with E/B/D issues 31.9% pay $1000+ out-of-pocket in medical expenses (compared to 17.5%) 31.9% say CYSHCN s health problems cause family members to cut back or stop working (compared to 17.5%) 31.7% say that their CYSHCN s health problems cause financial problems for the family (compared to 11.6%) 20% say family members have avoided changing jobs because of concerns about maintaining health insurance for their CYSHCN (compared to 15.4%) Core Outcomes: Source: (2010 Maryland Parent Survey) Adequate Insurance: 54.4% with E/B/D issues had adequate insurance and financing (compared to 65% without E/B/D issues) Other Disparities: Subgroups of CYSHCN who are far less likely to have adequate insurance are: Hispanic CYSHCN (46.3%) CYSHCN without a medical home (49.3%) CYSHCN with functional limitations (50.9%) CYSHCN ages years (53.8%) 27