Maine Works to Make System Navigation Easier for Children with ASD/DD and their Families
By Toni Wall
Director, Children with Special Health Care Needs Program, Maine Center for Disease Control and Prevention
Nancy Cronin, MA
ASD Systems Change Coordinator, Maine, Developmental Disabilities Council
In 2008, Maine began an ASD Systems Change Initiative sponsored by the Commissioners of Education, Labor and Health and Human Services. The ASD initiative was charged with analyzing the multiple systems of care that individuals with ASD and their families had to navigate. The work began by analyzing the early identification and early intervention systems, which revealed that it took an average of 32 months from parent concern to actual diagnosis of ASD. Stakeholder recommendations include lowering barriers to reduce the overall time between concern and diagnosis.
Utilizing the HRSA State Implementation Grant for Children and Youth with ASD allowed Maine to improve identification rates of children with ASD by encouraging early childhood professionals, such as Part C IDEA staff, head start staff, public health nurses and physicians, to screen all children at 18 months for an ASD. This initiative also is linked with the state CMS grant, Improving Health Outcomes for Children, which includes routine developmental screening in all well-child visits using the ASQ-SE and ASQ-3 as one of their pediatric quality-improvement projects with follow up with the MCHAD when indicated. Through the HRSA grant, Maine produced a training DVD and curriculum on the administration and scoring of autism screening tools. Hundreds of professionals have received the training and materials. In addition, Maine implemented monetary incentives to encourage professionals to screen for autism. Results have shown steady improvement, with a 98 percent increase in ASD screening at well-child visits over a one-year period.
A second issue is the long wait time to receive a diagnosis due to diagnostician wait-lists. Maine piloted new processes between early education professionals (Part C and Section 619B IDEA) diagnosticians to expedite the time between referral and diagnosis for those suspected of having an ASD. Preliminary results show a 54 percent reduction in time has been achieved. The change is a result of early childhood professionals assisting families with necessary paperwork needed for the first visit. In total, the multiple improved processes have shown a decrease between referral to diagnosis from 11 weeks to nine (19 percent) for children aged three to five years.
Mississippi MACSS Project: Changing Systems within a Community Health System of Care
By Jane Z. Siders, Ed.D.
Co-Director, Institute for Disability Studies
There are 21 Community Health Centers in Mississippi serving the health care needs of medically underserved and indigent populations, including those living in rural areas. The mission of the Mississippi Community Health Centers is to ensure equal access to quality, comprehensive health care services and the elimination of health disparities in the state. Community health centers play a critical role in the health care of Mississippi children and youth because of the rural nature of the state, the high rates of poverty, and the fact that Mississippi has the highest rate of disability per population in the nation. All 21 Community Health Centers provide developmental screening for young children, but none screen specifically for autism.
Through the HRSA State Implementation Grant for Children and Youth with ASD, the Mississippi Access to Coordinated Systems of Services (MACSS) project has teamed with the Southeast Mississippi Rural Health Initiative (SeMRHI) to develop and implement a screening protocol and algorithm for autism that includes both primary and secondary screens. The screening protocols and algorithm will be replicated at each of the 14 community clinics associated with SeMRHI. A Web portal has been developed for each of the 14 community clinics to report data on the numbers of children screened, the numbers of children who fail a secondary screen, the numbers referred for a full diagnostic assessment, the number of children diagnosed with autism, and information obtained during periodic follow-up.
During the final year of the project, replication information and technical assistance will be available to all 21 community health centers for use in their community clinics. Finally, a special health care clinic for children on the spectrum and those with other disabilities has been established to serve as a medical home at one of the primary SeMRHI clinics that is housed on the campus of a public school.
Housing a community health clinic on the campus of a public school increases access to a medical home for the large numbers of indigent and uninsured families residing in rural areas of Mississippi. Housing a specialty clinic in collaboration with the community health clinic provides family support and coordination of care that is not readily available with other health care providers. Replication of this specialty clinic across other Community Health Care Centers will ensure that children on the spectrum and those with other disabilities and their families have access to a system of community care that is coordinated across a network of providers.
Vermont Medical Home and Community-Based Teams Collaborate to Improve Services
By Janet Kilburn, LICSW
Medical Social Worker, Children’s Integrated Services Early Intervention, Children with Special Health Needs, Vermont Department of Health
The goals of the Vermont State Implementation Grant for Improving Services to Children and Youth with ASD/DD include increasing collaboration between the Medical Home and community-based teams. An exciting accomplishment this year is the piloting of care coordination by placing medical social workers, from the Vermont Title V CYSHCN program, in Medical Homes. The mutual experience has produced a practical description of the scope of collaboration needed between Medical Homes and communities, as well as strategies that work to increase understanding of the pediatric system of care and access to community resources. This activity is coordinated with the Vermont Blueprint for Health expansion to pediatric populations, Children’s Integrated Services Early Intervention (Part C), and the medical home training projects of the Leadership Education in Neurodevelopmental Disabilities (LEND) program at the University of Vermont (VT-ILEHP).
Since the inception of Part C, CYSHCN medical social workers in Vermont have an integrated role in order to ensure streamlined navigation and care coordination for families; they work directly in Child Development Clinics in the evaluation of children with ASD/DD; they provide regionally based care coordination to families of children with a wide range of special health needs; and they also are core members of Part C Early Intervention teams. Participating in care conferences in the Medical Home has further integrated these roles and reduced categorical/ programmatic silos and fragmentation.
These care conferences are family-centered meetings, led by the primary care provider (typically lasting one hour), that may include any specialty care providers, community providers, schools, the family and their formal and informal supports (i.e., personal care attendants or grandparents). The purpose is to organize and streamline care for families by facilitating effective communication about strengths, challenges, current services, needs and gaps in services. A coordinated plan of care is developed with goals, resources and action steps. These regular care conferences are an efficient and effective strategy of health care reform, utilizing the expertise of all providers and facilitating creative problem solving that supports the both child and family health. Family success stories to date include: 1) preventing out of home institutional placement of a child with a neurodegenerative syndrome and ASD through creative, multi-agency funding and wrap-around home based services, 2) providing in-home anticipatory bereavement counseling and increased nurse case-management as part of a new pediatric palliative care program, and 3) the recent expansion of the role of CYSHCN Title V care coordination to include not only social workers but psychiatric consultation as well (our Child Development Clinic psychiatrist also is assisting in the Medical Home with medication management, links to community mental health resources, etc.).
Key outcomes that emerged from this pilot include:
- Increased understanding by physicians, families and community providers of the health care delivery system
- Appropriate referrals and increased access to community-based resources, including psychiatric consultation
- Identifying systems issues and barriers (insurance issues, poverty, lack of psychiatric and mental health services, etc.)
- Increased ease of use and coordination of community-based services for families
- Prevention of duplication of services
This Vermont medical home pilot recently was selected as a case study for research by the National Center for Ease of Use of Community-Based Services, one of six national centers addressing the core outcomes measures for success in serving children with special health care needs.