2012 Indiana Parent/Family Needs Assessment Survey

Transcription

1 Reprt t the Legislative Cmmissin n Autism: Indiana Parent/Family Needs Assessment Survey Cnducted By: Cathy Pratt, Ph.D., BCBA-D Directr Sctt Bellini, Ph.D. Prfessr, Schl f Educatin Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 East Tenth Street Blmingtn IN Indiana s University Center fr Excellence n Disabilities Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://

2 Reprt t the Legislative Cmmissin n Autism: 2012 Participants 237 Families Participated Respndents Parents- 94% Grandparents- 4% Other- 2% 65 Cunties Represented 15% f families have multiple children with an autism spectrum disrder 87% f children live at hme with parents 15% have mre than ne child n the autism spectrum (up t 5) The Children Gender f Child Male-79% Female- 21% Mean Age Age Range- 2 t 43 Primary Disability In 2009 In 2006 Autism- 51% 59 % 57% Asperger Syndrme- 21% 22% 25 % Pervasive Develpmental Disrder-Nt Otherwise 14% 15 % Specified- 27% Other- 4% 5% 4% 60 % f the Children had a C-Mrbid Disability 77% ADHD- 35% Mental Retardatin- 15% Learning Disability- 14% Obsessive Cmpulsive Disrder- 16% Anxiety Disrder- 27% Seizure Disrder- 11% Depressin- 15% Bi-Plar Disrder- 5% Other- 23% (e.g., medical, neurlgical, genetic, and sensry disabilities) 2 Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://

3 Reprt t the Legislative Cmmissin n Autism: 2012 Surces fr Autism Related Infrmatin Infrmatin Surces fr Families Indiana Resurce Center fr Autism- 75% Bks- 89% Internet- 87% Newspaper/Magazines- 52% Jurnal Articles- 53% Televisin- 31% Cnferences/Wrkshps- 63% Autism Sciety f America- 40% Autism Sciety f Indiana- 51% Lcal Schl District Autism Cnsultant- 26% Private Therapists- 47% Schl Persnnel- 43% Autism Supprt Grup- 52% Pediatrician- 44% Other- 17% (Easter Seals Crssrad, Lgan Center) Primary Infrmatin Surce In 2009 Internet- 31% 35 % Bks- 16% 15 % Indiana Resurce Center fr Autism- 11% 11 % Cnferences/Wrkshps-7% 6 % Schl Persnnel- 3% 4 % Autism Sciety f America- 1% 1 % Autism Sciety f Indiana 3% Autism Supprt Grup- 9% 5 % Newspaper/Magazines- 3% 1% Jurnal Articles-1% 3 % Pediatricians-5% 4 % Televisin- 0% 1% Other- 5% 1% 3 Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://

4 Reprt t the Legislative Cmmissin n Autism: 2012 Schl Issues Schl Placement In 2009 In 2006 In % were in Public Schl (Charter) 78% 81% 74% 4 % were in Private Schl 4% 5% 13% 3 % were in Cllege r at a University 1% 2% 4% 3 % were in Separate, Special Needs Schl 3% 4% 3% 3 % were in Hme Schl 4% 4% 3% 1 % were in a Residential Prgram 4% 1% 2% Classrm Placement 32 % were in Full-time General Educatin Classes 27% 26% 25% 14 % were in Full-time Self-Cntained Classes 19% 24% 26% 1 % were in Full-time Resurce Rms 3% 2% 2% 40 % were in Cmbined Placements 37% 48% 48% Discipline 8 % had been Suspended in the Last Year 8% 9% 8% 7 % had been Expelled 3% 2% 4% Parental Satisfactin with Educatinal Prgramming 33% were Dissatisfied r Very Dissatisfied 23% 26% 26% 51% % were Satisfied r Very Satisfied 62% 56% 51% What additinal service des yur child need t be successful at schl? Scial Skills Training - 64% Occupatinal Therapy/Sensry Integratin - 57% Behavir Cnsultatin - 49% One-On-One Paraprfessinal - 24% Cunseling - 23% Speech Therapy - 9% Intensive Early Interventin Behavir Therapy - 15% 4 Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://

5 Reprt t the Legislative Cmmissin n Autism: 2012 Mental Health and Legal Issues Mental Health Legal Emplyment Issues In 2009 In 2006 In % f the Children had Received a Shrt-term 5% 6% 7% Crisis Management interventin at a Hspital in the Past Three Years 1 % f the Children had been Arrested r 1% 1% 2% Emplyment Charged With a Crime in the Past Three Years In 2006 In % f the Children (age 18 and lder) were Unemplyed 69% 61% 5 % Wrk in Sheltered Wrkshps 11% 14% 26 % Wrk in Cmmunity Jbs 20% 25% Thse wh wrk, wrk an average f 17 hurs per week 21% 21% Median Annual Incme was $7,957 $7687 $6,516 Des yur sn receive services thrugh Vcatinal Rehabilitatin? 44% Hw wuld yu rate the quality f VR services fr yur sn/daughter? 30% Gd r Very Gd. 41% Neutral. 29% Pr r Very Pr. What supprts r services des yur child need in finding and keeping a jb? One-n-One Jb Cach-74% Scial Skills Training- 66% Behavir Cnsultatin- 36% Vcatinal Training- 52% Occupatinal Therapy- 10% Cunseling- 26% Speech Therapy- 7% Physical Therapy- 3% 5 Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://

6 Reprt t the Legislative Cmmissin n Autism: 2012 Insurance and Expenses General Expenses and Insurance Cverage In 2009 In 2006 In % had been Denied Insurance Cverage fr 19% 23% 27 % their Child with ASD in the Past Three Years 67 % f the Families Purchased Private Services 58% 57% 57% in the Past Three Years What d yu estimate as the mnthly cst f services that yu need t successfully supprt yur sn r daughter at hme? $1005 (Mean) Insurance Cverage fr Specific Services: Service Full Cverage Partial N Cverage Speech Therapy 11% 52% 37% Occupatinal Therapy 10% 56% 33% Scial Skills Training 8% 19% 73% Physical Therapy 11% 44% 44% Cunseling 12% 55% 33% Behavir Cnsultatin 18% 32% 50% Assessment/Evaluatin 21% 29% 50% Medical Treatment 16% 59% 25% Medicatins 15% 66% 19% In-Hme Behavir Therapy 18% 29% 53% Sensry Integratin 8% 15% 77% Psychiatric/Medicatins 7% 75% 18% Mst have difficulty with accessing and paying fr quality psychiatrists, behavir cnsultants, and ccupatinal therapists. 6 Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://

7 Reprt t the Legislative Cmmissin n Autism: 2012 Medicaid Waiver Applying In 2009 In 2006 In % f Families were Aware f Medicaid Waivers 88% 82% 84 % 80 % f the Families wh Applied were 66% 50% 72 % n the Waiting List 20 % f the Families wh Applied are Currently 50% 28 % 33 % Receiving Waivered Services (32 Families) Autism Waiver- 34% Develpmental Disability- 13% Supprt Service Waiver- 53% Length f Time n Waiting List Families n the Waiting List have been Waiting 53 m. 44 m. 27 m. an Average f 66 Mnths (up t 264 mnths). Families Currently Receiving Waivered Services 45 m. 38 m. 24 m. were n the Waiting List an Average f 69 Mnths. Max was 15 years. Satisfactin with Waivered Services 35 % were Satisfied with the Availability and 45% 46% 50 % Quality f Waivered Services 35 % Stated that Sufficient Funds are Available 44% 41% 63 % thrugh Waivered Services t Purchase Needed Services fr Their Child with ASD 39 % Stated That There Were a Sufficient 46% 46% N/A Number f Service Prviders in Their Area 7 Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://

8 Reprt t the Legislative Cmmissin n Autism: 2012 Perceived Outcmes f Waiver As a Direct Result f the Waiver, ur Sn/Daughter Is Ding Better at Hme In 2009 In % Agree r Strngly Agree 2% 70 % 16% Disagree r Strngly Disagree 15% 11 % Is Ding Better at Schl 23 % Agree r Strngly Agree 35% 55 % 31 % Disagree r Strngly Disagree 24% 18 % Behavirs Have Imprved 60 % Agree r Strngly Agree 51% 66 % 19 % Disagree r Strngly Disagree 18% 12 % Cmmunicatin Has Imprved 47 % Agree r Strngly Agree 45% 58 % 25 % Disagree r Strngly Disagree 18% 13 % Is Ding Better in Scial Situatins 57 % Agree r Strngly Agree 54% 63 % 16 % Disagree r Strngly Disagree 16% 14 % Is Better Able t Deal with Prblems 40 % Agree r Strngly Agree 40% 54 % 12 % Disagree r Strngly Disagree 21% 16 % As a Direct Result f the Waiver, ur Family Has Mre Time fr urselves 62 % Agree r Strngly Agree 49% 62 % 31 % Disagree r Strngly Disagree 24% 23 % Has Mre Time fr Recreatinal Activities 44 % Agree r Strngly Agree 49% 52 % 28 % Disagree r Strngly Disagree 22% 24 % Has Mre Time fr Friends and Other Relatives 38 % Agree r Strngly Agree 38% 48 % 31 % Disagree r Strngly Disagree 27% 25 % Has Been Better Able t Take Vacatins 18 % Agree r Strngly Agree 32% 34 % 47 % Disagree r Strngly Disagree 31% 39 % 8 Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://

9 Reprt t the Legislative Cmmissin n Autism: 2012 In 2009 In 2006 Has Mre Time t Spend n Own Wrk and Chres 55 % Agree r Strngly Agree 49% 50 % 25 % Disagree r Strngly Disagree 26% 27 % Has Experienced Less Overall Stress 53 % Agree r Strngly Agree 46% 58 % 22 % Disagree r Strngly Disagree 26% 26 % Has Experienced Less Financial Wrry 55 % Agree r Strngly Agree 52% 53 % 21 % Disagree r Strngly Disagree 25% 23 % 9 Indiana Resurce Center fr Autism Indiana Institute n Disability and Cmmunity Indiana University, Blmingtn 2853 E. Tenth St. Blmingtn, IN (812) Fax (812) htttp://