A CommunityBased Participatory Survey for Children with Developmental

A Community-Based Participatory Survey for Children with Developmental Disabilities and Special Healthcare Needs Sarah Swanson, B. S. Ed. and Mark Smith, MS, The Munroe-Meyer Institute, University of Nebraska Medical Center, Omaha, NE 68198 Nebraska’s Rank in Family Support ABSTRACT Public Spending for Family Support and Supported Living as a Percentage of Total I/DD Spending Individuals with disabilities are frequently identified as a group experiencing health disparities. (Centers for Disease Control, 2013) In addition, when a child is diagnosed with a disability or complex healthcare need, the family becomes the day-to-day provider regarding their child’s needs. Families in this role have been identified as another group that often experience health disparities and, in addition, increased levels of stress. (Mayo Clinic, 2013) In 2011, at the start of this project, Nebraska ranked 49 th in family support expenditures. (Braddock, et. al. , 2011). More recently, his 2013 comparison of states had Nebraska ranked at 41 st in the number of families served. It should be noted that since Braddock began publishing the “State of the States in Developmental Disabilities, ” Nebraska has never scored higher than the lowest quartile nationally in family support services. (Braddock, et. al. , 1990, 2013) In 2011, David Braddock, ranked Nebraska 49 th in family support expenditures in his publication: “State of the States in Developmental Disabilities. ” This sobering statistic illustrates the lack of state support offered to families having a child with a developmental disability or complex healthcare need. Given that Braddock obtained his data at the state level, this initial data was not information obtained directly from families in Nebraska. To obtain specific, first-hand information regarding Nebraska families’ experiences with services and supports available to them, staff from the University Center for Excellence in Developmental Disabilities at the Munroe-Meyer Institute collaborated with the Arc of Nebraska to develop and disseminate a Community Based Participatory Survey in order to better evaluate families’ experiences in obtaining services and supports. Results: Over 470 individuals responded to the survey. The frequency of ethnic, racial and other minority respondents closely matched state demographics. The majority of the respondents were families having one or more children under the age of 21 with a developmental disability or complex health condition. The next largest response group was professionals. The responses showed that there were many barriers in obtaining services including: a lack of knowledge by families, barriers accessing Medicaid programs in Nebraska’s call center, services not being available locally and lack of knowledge of professionals. Less than one-third, (29%) of the respondents said that there were adequate services. The data illustrate that there a small number of families that are getting what they need, but over two-thirds indicate that there are many barriers. While this survey was used to obtain information for a specific population, the process could be used to obtain data for any target group. General Findings Themes: “The State of the States in Developmental Disabilities Project” (Braddock, 2013) Family Support: Survey Development Process Advisory Group An advisory committee oversaw the development of the survey and implementation of the entire project. The committee was composed of family advocates, individuals working at the state policylevel including representatives from the Legislative Ombudsman’s Office, state Senator’s offices, faculty from the University of Nebraska Medical Center’s College of Public Health, staff from the Protection and Advocacy Organization, other Legal Aid organizations, and representatives from other organizations who work directly with families. “Support for children and adults with I/DD living in the family home, hereafter referred to as family support, varies greatly across the nation. In the present study, family support was defined as persons with I/DD living in the family home receiving any community-based service administered or financed by the state I/DD agency. ” Access Challenges • • • • Information Respite Summer Child Care Parent Training Support Transportation Household Assistance Economic Assistance Educational Supports Social Skills Training Systems Barriers • • • “Regardless of the variation in state definitions, the goals of family support are largely agreed upon by advocates, family members, policymakers, and researchers. A principal goal is keeping the family intact and building upon the family’s existing strengths and resources in order that the individual with a disability can continue to live in the family home. ” (Braddock, 2011) Survey Respondents Too many points of contact No Outreach Waiting lists Paperwork is burdensome Paperwork is lost Service Coordinators not knowledgeable Lack of no wrong door/single entry point into system Therapies too costly Inadequate Mental and Behavioral Health services Income too high for Medicaid Denial of services Inadequate Insurance coverage Out of pocket costs too high Challenges for Families • • • Long wait periods Inadequate Assistive Technology Services No Autism Waiver or services through Medicaid Insufficient Waiver Funding Lack of Service Consistency Lack of Transparency/Accountability Poor Transition Supports Little Special Education Advocacy Lack of Navigational Support Priority Recommendations Regional Workgroups For the purpose of capturing true geographic representation, the state was divided up following the six historical Developmental Disabilities Regions. In each region, a facilitator as well as 5 -7 members were identified. These were selected based on their knowledge and experience with programs and connection to families and agencies in their region. In most, cases the workgroups were composed of family members, including many serving in professionals roles. The facilitators and workgroup members were paid a stipend for their time on this project. • • • Expand state advocacy projects with an emphasis on family education, support and involvement Establish a coalition of advocacy groups and policy-makers to directly address these concerns Maximize federal matching dollars available Provide routine training and outreach opportunities to families on programs and services available Continue to collect data on unmet needs, including specific family experiences Care-coordination for example, as part of the medical home/health home models, must be made available to all families affected by disability or chronic health issues. • Services coordinators and other providers must receive training in and provide systems and generic service navigation utilizing person and family-centered planning Process: At the outset, project staff met with each regional workgroup. During this initial meeting, project staff presented the rationale for the survey and the plan for the survey development. The Regional workgroups shared their experiences with accessing services, identifying the gaps and barriers as well as detailing the service-delivery strengths within their region. This information was recorded, common themes were developed, and these were shared with the advisory board. These “themes” guided the development of the survey. Next, a draft survey was reviewed by regional workgroup members using the state tele-health network. Two additional meetings using the Adobe Connect webinar platform were held to insure further workgroup member participation. In each case, workgroup members were asked to give feedback on the draft survey. After each meeting, changes were made and were sent to the workgroups for further feedback. This process continued until project staff felt that all suggested changes had been adequately incorporated into the final survey. The survey was then broadly disseminated in hard copy and online using the Survey Monkey tool. To make certain that the survey was accessible, Answers for Families, a Resource and Referral Center provided their toll-free number and offered live assistance for individuals needing additional supports. The survey was also translated into Spanish and PTINebraska, the state’s Parent, Training and Information Center, mailed the survey out to Spanishspeaking families from their client base. The survey was launched in April 2013 and concluded by June 2013. Unmet Family Needs References and Acknowledgements: Centers for Disease Control and Prevention. (2013, October). Disability and Health. Retrieved from http: //www. cdc. gov/ncbddd/disabilityandhealth/healthstatus. html Mayo Clinic. (2013, September). Caregiver Stress. Retrieved from http: //www. mayoclinic. com/health/caregiver-stress/MY 01231 Braddock, D. , Hemp, R. , Rizzolo, M. C. , Haffer, L. , Shea Tanis, E. , & Wu, J. (2011). State of the States in Developmental Disabilities. Retrieved from http: //www. stateofthestates. org/documents/SOS%20 FINAL%20 REVISED%20 EDITION 2011. pdf Word Cloud Analysis of Child’s Disability Reported: ADHD ASD Autism Autistic Birth Brain Cerebral Palsy Child Daughter Developmental Delays Disability Family Hearing Heart Mental Professional Provider Special Education Teacher Pdd-nos Syndrome TBI Trisomy 21 Reading Braddock, et. al. (2013). State of the States in Developmental Disabilities Project Website. Retrieved from http: //www. stateofthestates. org/index. php/within-state-comparison *Funding for this project was provided by the Nebraska Planning Council for Developmental Disabilities with partial support by grant 90 DD 0701 from the Administration on Intellectual and Developmental Disabilities (AIDD), Administration for Community Living (ACL), Department of Health and Human Services.