Milestones National Autism Conference | June 11‐12, 2019 Speaker Disclosure Information Karen J. Ishler, PhD, LSW Senior Research Associate David E. Biegel, PhD Henry L. Zucker Professor of Social Work Practice and Supporting Transition‐Age Youth Professor of Psychiatry and Sociology & Their Families: Jack, Joseph and Morton Mandel Research Findings School of Applied Social Sciences Case Western Reserve University Karen J. Ishler, PhD, LSW Dr. Ishler and Dr. Biegel are speaking at the Conference on a & David E. Biegel, PhD voluntary basis. Neither has any relevant financial or non‐financial Project Co-Directors relationships to disclose. Cleveland, OH | June 12, 2019 Acknowledgements Acknowledgements • Funding: • Other Project Team Members: – Mt. Sinai Catalytic Autism Research Award – Fei Wang, Project Coordinator – Key Interviewers: Kristen Berg; Stacy Miner; Tyrone Hamler; others through the International Center for Autism Research & Education, CWRU – Tugba Olgac, Research Assistant – Research Development & Training Grant Award • Partner Agencies & Organizations: [selected list] from the Jack, Joseph and Morton Mandel Milestones Cuy Co Board of DD Schools School of Applied Social Sciences, CWRU PEP‐Prentiss Center Autism Speaks ADAMHS Board • Co‐investigators: Music Settlement Support Groups & Listserves – Sarah Lytle, MD (UH) Autism Centers & Clinics—UH, MetroHealth, Cleveland Clinic – Ronna S. Kaplan, MA, MT‐BC (Music Settlement) • Family Members Who Participated Milestones Autism Resources milestones.org | 216‐464‐7600 | info@milestones.org Page 1
Milestones National Autism Conference | June 11‐12, 2019 Today’s Presentation Background • Background • Growing numbers of adolescents & young adults with an Autism Spectrum Disorder (ASD). • Study Aims • Many young persons with ASD are at risk for reduced • Methods quality of life in adulthood. • Primary Findings – Service needs & barriers • Across chronic illnesses and disabilities, providing care • Next Steps for a family member can result in family caregiver burden and depression. • Discussion • Families of adolescents and young adults with ASD face a variety of stressors, especially during the transition years. Gaps in Knowledge 3 Study Aims Note: #1 – Examine Service Use of Youth with ASD & Their Family CGs “CG” = Family Caregivers ‐Service use & experiences “Youth or Transition‐Age Youth” = Adolescents & Young Adults ‐Facilitators & barriers to service use • Much less research with families of transition‐age ‐Gaps in needed services youth with ASD than with younger children. #2 – Assess CG Burden Among These Family CGs • Gaps in Knowledge: #3 – Examine Impact of CG Stressors, Appraisals, Resources, – How are patterns of service use and service gaps and barriers and Services Gaps & Barriers on Family CG Outcomes linked to CG outcomes? – What factors are associated with caregiver burden for Also within each: Explore potential differences by family CG family CGs? demographics and characteristics of youth with ASD. – Are CG outcomes shaped by differences in CG demographics and/or characteristics of youth with ASD? Milestones Autism Resources milestones.org | 216‐464‐7600 | info@milestones.org Page 2
Milestones National Autism Conference | June 11‐12, 2019 Methods Methods • Interview Instrument: • Design: – Close‐ended & open‐ended questions – Cross‐sectional survey – Measures used in ASD & other CG research (some adapted) – In‐person interviews using trained graduate students • Interviews: – $25 Visa gift card for participation – Range: 50‐180 min. • Inclusion Criteria: – Average = 95 min. – Primary family CG (parent, grandparent, guardian) to an adolescent or young adult (age 16 to 30) who had • Data Collection: been diagnosed with an Autism Spectrum Disorder – June 2017 – Nov 2018 – No exclusion for multiple diagnoses or living arrangement • Recruitment: NE Ohio ASD service providers, hospitals, self‐help groups, schools, conferences & special events, media Final Sample N = 174 Family CGs Characteristics of CGs Referred (N = 275) Family CGs Not Screened (n = 36) Screened (N = 239) & Not Eligible (n = 31) Eligible Youth with ASD (N = 208) Unable to Reach (n = 20) Unable to Participate (n = 8) Refused (n = 6) Original Goal Completed Interviews N = 150 (N = 174) Completion Rates: • 63.3% of all Referrals • 83.7% of all Eligible cases Referred from 28 different community agencies/organizations or sources Milestones Autism Resources milestones.org | 216‐464‐7600 | info@milestones.org Page 3
Milestones National Autism Conference | June 11‐12, 2019 Caregivers n % Range Caregivers (cont.) n % Age (yrs.) Married/Partnered 122 70.1% Mean ( SD ) 54.2 (6.8) 35 ‐ 72 Cuyahoga County 116 66.7% Gender Employment Status Female 159 91.4% Working FT 73 42.0% Male 15 8.6% Working PT 45 25.8% Relationship to ASD Youth Not working 56 32.2% Parent 168 96.6% Annual Household Income (N = 170) Other 6 3.4% < $30,000 22 13.0% Length of Time as CG (yrs.) $30,000 to $74,999 51 30.0% Mean ( SD ) 20.3 (4.5) 4 ‐ 30 $75,000 to $99,999 22 13.0% Race/Ethnicity $100,000 to $150,000 39 22.9% White 139 79.9% > $150,000 36 21.1% Black 29 16.7% Other or Unknown 6 3.4% Youth with ASD (cont.) Youth with ASD n % Range Asked about 8 Diagnoses: Age Autism M ( SD ) 20.9 (3.7) 16 ‐ 30 Asperger’s Gender Developmental Disability Primary Diagnosis Intellectual Disability Female 44 28.0% ADD/ADHD Male 113 72.0% Learning Disability Asperger's Living Arrangement 15.5% Seizure Disorder (or Epilepsy) In CG’s home/apt. 142 81.6% Mental Health Disorder In relative or friend’s home/apt. 7 4.0% PDD Autism Own or shared home/apt. 13 7.5% 3.4% 68.4% Other supervised setting (e.g., group 12 6.9% Age at ASD diagnosis: Unknown, home, boarding home, dormitory) Mean = 6.4 (SD = 5.2) Other, or Multiple Median = 4.0 12.6% Milestones Autism Resources milestones.org | 216‐464‐7600 | info@milestones.org Page 4
Milestones National Autism Conference | June 11‐12, 2019 Youth with ASD (cont.) Youth with ASD (cont.) High/Sec. School School Status • 93% had multiple diagnoses n = 71 (76.3%) Diagnosis (all that apply) n % College or Autism 150 86.2% Vocational School Mental Health (MH) Disorder 106 60.9% In school n = 22 (23.7%) 53.4% ADD/ADHD 83 47.7% Not in school Developmental Disability 79 45.4% 46.6% Common MH Diagnoses: Learning Disability 58 33.3% Anxiety (76%) Depression/Mood (39%) Asperger’s 56 32.2% Employed OCD (21%) Intellectual Disability 47 27.0% n = 49 (60.5%) Other (21%) [incl. PTSD, Impulse control Seizure Disorder or Epilepsy 24 13.8% disorders, Psychotic disorders] Other (CP, Tourette’s, etc.) 30 17.2% Not Employed n = 32 (39.5%) Youth with ASD (cont.) Youth with ASD (cont.) Support Level Severity of impairment rated in 3 areas: • Scales of Independent Behavior‐Revised (Bruininks et al., 1996) Receptive communication Expressive communication Social functioning • Combines Adaptive Functioning & Problematic Behaviors Each rated from 0 = None to 4 = Very Severe • Level of Support & Supervision Needed (age‐based norms) Total Score: 0 to 12 None or Infrequent 17.2% Intermittent/Periodic 38.5% Observed Range: 1 – 12 Limited, but Consistent 18.4% Mean = 5.7 ( SD = 2.4) Mdn = 6.0 Frequent/Close 16.1% Extensive/Continuous 9.8% 0% 10% 20% 30% 40% Milestones Autism Resources milestones.org | 216‐464‐7600 | info@milestones.org Page 5
Milestones National Autism Conference | June 11‐12, 2019 Youth with ASD (cont.) Youth with ASD (cont.) n % 40% Other Proxies for Impairment: How often does 32.8% Ever Had an IEP 169 97.1% he/she attend 30% Ever Served by DD Board 124 71.3% social or 21.3% 20.1% Receives SSI &/or SSDI 87 50.0% 20% recreational 14.4% Health Care Coverage & Access: 11.5% activities outside 10% Medicaid (or Medicare) Coverage 100 57.5% the home (either Have Medicaid Waiver? (out of 100) 57 57.0% alone or with 0% Never Rarely Sometimes Often Very Often someone else)? (< 1 (1‐3 (1‐2 (> 3 SELF time/mo.) times/mo.) times/wk.) times/wk.) Waiver Type: Level 1 9% 39% Who ASD Youth, About CG or primarily Independently 50/50 Someone Else organizes & I/O Other or initiates such 40% 14.4% 31.0% 54.6% Unknown activities? 12% Service Use & Service Needs Services Youth/family received in the past 6 months….? Used Service Use Service Use If Received, Not Received, but Not Received, but 15 types, e.g.: How & NOT Needed Helpful? Case Management Received Needed Service Employment 1‐Not at Unmet Medical Care Service Needs all Need Mental Health Care to Personal Care 5‐Very Speech/Language Life Skills Education Supportive or & Training Compl. Therapies Occupational therapy or other training to Transportation improve self‐care, daily living skills, and Perceived self‐advocacy. Helpfulness Milestones Autism Resources milestones.org | 216‐464‐7600 | info@milestones.org Page 6
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