The State of Alabama CSHCN Program is administered by CRS, a division of ADRS. CRS’ mission embodies the principles of comprehensive, community-based, and family-centered care. The mission of CRS is to enable children and youth with special health care needs and adults with hemophilia to achieve their maximum potential within a community-based, culturally competent, family-centered, comprehensive, coordinated system of services. Coordinated health services are delivered via 14 community- based clinics across eight service districts. In Alabama, 21.6% of children and youth ages 0-17 have a special health care need, higher than the national percentage (19.4%). Based on these estimates, 233,724 children and youth in Alabama have a special health care need (www.childhealthdata.org/browse/survey).
To fully implement the 2021 – 2025 Block Grant State Action Plan, CRS created a Block Grant State Action Plan team. The team includes the members of the CRS Needs Assessment Leadership team, a Local Parent Consultant, and a Social Work Transition Specialist. The team met monthly during FY 2021 to discuss activities surrounding the outlined strategies and work through any challenges encountered while attempting to carry out the activities.
In addition, ADRS CRS entered into an agreement with the University of Alabama at Birmingham (UAB) School of Public Health, Department of Health Care Organization and Policy, Applied Evaluation and Assessment Collaborative (AEAC) to consult and assist with administering the activities outlined in the Block Grant State Action Plan. These activities include survey design, administration, and analysis. AEAC and CRS held monthly meetings throughout FY 2021 to work collaboratively on evaluation components.
Priority Need – Lack of or inadequate access to services necessary for CSHCN to transition to all aspects of adult life.
ESM 12.1 – Percent of YSHCN enrolled in State CSHCN Program who report satisfaction with their transition experience to adulthood.
Ensuring YSHCN are equipped with the skills and tools necessary to transition to adult health care has always been a priority for CRS. At age 14, youth are transferred to their district's transition social worker. During FY 2021, these specialists continued to provide targeted, comprehensive transition services to help CRS enrolled youth and their families plan for adulthood. Services include providing care coordination, transportation assistance, referral to community resources, and translation services when needed. Transition social workers use the Six Core Elements of Health Care Transition™ Transition Readiness Assessment for Youth and the Transition Readiness Assessment for Parents/Caregivers to assess transition readiness. CRS staff also participate in transition team meetings with local school districts to assist in transition planning.
In FY 2021, there were 19 CRS transition social workers serving 3,647 YSHCN ages 14-21. These social workers ensure that YSHCN have a Comprehensive Plan of Care (CPoC) in place. The plan covers health/medical issues, educational needs, developmental and independent living skills, and transitioning to adult health care. The plan is updated annually with the youth and their family.
CRS offers YSHCN ages 12 to 21 the opportunity to participate in Teen Transition Clinic (TTC). The TTC is offered at five locations throughout the state and is a specialized clinic designed to assist YSHCN as they make the transition to adult life. YSHCN attending TTC participate in a vocational evaluation. The results of the evaluation are used to assist in identifying additional services, supports and accommodations for high school, college, and/or career in an effort to maximize the potential of each individual. During clinic, the attendee and their family work together with a team to explore options in planning for the future. Topics include education, independent living, employment, assistive technology, and recreation. Based on the specific needs of the youth that is attending TTC the team may consist of the following: adolescent medicine physician; rehabilitation medicine physician; pediatrician; rehabilitation technology specialist; vocational assessment specialist; vocational rehabilitation counselor; independent living specialist; physical therapist; nutritionist; audiologist; SLP; care coordinator; parents, other relatives; friends; and school staff among others. After completing the clinic, the attendee and their family are provided a copy of the vocational evaluation and a written summary from the clinic visit, along with team members’ suggestions and resources for further planning. Vocational Evaluation reports can be shared with the school system for IEP planning and recommendations from the report are also used to support college accommodation.
In FY 2021, CRS had 76 YSHCN participate in TTC which is a 40 percent increase from FY 2020. The increase is attributed to more CRS clients and their families being educated about TTC, consistent use of transition readiness assessments, development of transition plans of care, and access to additional evaluation resources. During FY 2021, CRS collaborated with ADRS Vocational Rehabilitation Deaf/Hard of Hearing (HOH) unit to launch the first Deaf/HOH TTC. The Deaf/HOH TTC follows the TTC model but includes specialized team members such as pediatric and adult audiologists, sign language interpreters, and Rehabilitation Engineers with expertise in Deaf/HOH technology.
One mother describes their CRS TTC experience as, “My daughter has been a client of CRS for several years now. When her team there told me about their teen transition clinic, it sounded like a great fit for our family. I try to help my daughter learn skills like self-advocating and try to help her prepare for the future, but sometimes it helps to have someone else on her team with an outside perspective. Going through the process of teen transition clinic helped me feel more comfortable as a parent but more importantly, I think it helped my daughter gain some confidence and understanding of her own strengths and needs as well as what resources are available as she transitions into adulthood. She is now 18 years old and is using some of the resources made available to her through the clinic, including vocational rehab, in her first semester of college. Thank you for a great program!”
The Vocational Rehabilitation Service (VRS) program is also located within ADRS. A continuum of services between CRS and VRS is encouraged through regular meetings and consistent communication between CRS transition social workers and VRS counselors to ensure appropriate accommodations are in place for educational and employment success. CRS and VRS staff have continued to collaborate to address issues and challenges in the transition process. Throughout FY 2021, CRS and VRS staff continued to meet virtually or in-person with appropriate precautions to assure that YSHCN received timely and appropriate services to assist them with health, education, and employment- related challenges.
CRS Transition Social Workers continued to build a network of adult health care providers for YSHCN. Having a strong network ensures that CRS can link YSHCN to the appropriate adult healthcare provider and community services. Building these networks occurs at the local level and is completed through in-person presentations to physicians providing adult healthcare and participation in outreach activities focused on transition. COVID-19 continued to have impacts on in-person provider visits and outreach events. Many staff continued conducting presentations for providers via Zoom.
In FY 2020, one of the CRS Transition Social Work Specialists in the Homewood CRS office began serving on the UAB/COA Transition Steering committee to assist with the development of a hospital wide transition policy. The goal of the committee was to develop a global transition policy and build relationships between hospital disciplines. Through this committee the Staging Transition for Every Patient (STEP) Medical Clinic started in September 2020 to assist with transition to adult health care. It is the first formal program of its kind in Alabama and the surrounding region. STEP is designed to facilitate transition of care for patients with chronic/complex diseases of childhood as they are preparing to exit the COA system for the adult model of care at UAB. In FY 2021, the CRS Transition and Traumatic Brain Injury Social Work Specialists from the Homewood office continued to provide social work support in the STEP Clinic. In partnership with the UAB staff social worker, CRS social workers facilitate patient referrals between programs, assist with access to needed resources, and provide community-based follow-up. CRS staff also provide a link between UAB physicians and ADRS programs across the state, supporting a continuation of care for transitioning young adults with complex medical needs previously unavailable for this population. CRS also participated as a member of the planning committee for a Birmingham area transition conference targeting the needs of young adults with medical complexity in conjunction with UAB STEP, COA, and United Ability.
Another strong collaboration to enhance transition services for YSHCN needs in Alabama is with the local school systems. Representatives from CRS work with schools to plan and participate in Transition Resource Fairs in their local communities. These events promote awareness to students, caregivers, educational, medical, and other community stakeholders. Some of the topics presented included navigating complex medical transitions, becoming a better self-advocate, transition from high school to college, Medicaid waivers, and employment.
Enhancing the knowledge and skills of CRS transition social workers and other CRS care coordinators is critical to providing quality services. Skill building is done through participation in internal and external training opportunities. CRS staff, including LPCs and CRS transition social workers, received continued education on how to use the various components of the Six Core Elements of Health Care Transition™ 3.0. As the majority of FY 2021 continued to be impacted by COVID-19 travel restrictions, training was conducted locally by CRS Social Work Administrators and Social Work Specialists or conducted virtually.
CRS transition social workers attend the annual Alabama Transition Conference Training Series. This conference is a partnership between ADRS and Auburn University and provides attendees with updates regarding state and national transition policies and best practices when working with youth and young adults with special health care needs. In FY 2021 the conference was held virtually due to COVID-19.
In order to assess the effectiveness and individual satisfaction of CRS transition services CRS collaborated with the AEAC to develop a transition survey aimed at capturing the perception and experiences of transition-age youth enrolled in CRS services. The overall goal of the survey is to collect vital information from enrolled youth that could improve CRS transition services. In an effort to develop a robust instrument, the team began reviewing existing literature and identifying transition surveys to aid in the development of a potential framework. Through that search, two surveys were identified, reviewed, and used to inform question development and survey design: the Six Core Elements of Health Care Transition 2.0 Health Care Transition Feedback Survey for Youth and the State and Local Area Integrated Telephone Survey (SLAITS) 2007 Survey of Adult Transition and Health (SATH).
In concert with the AEAC and using the surveys identified in the literature, the Block Grant State Action team developed questions around elements of transition that are offered through CRS and required of CRS staff. Subsequent meetings were held to modify the language level and phrasing of the questions as well as adjusting the flow of the survey. This approach was used to ensure the survey was accessible to all potential respondents and adequately measured service delivery as well as overall satisfaction.
In addition to collaborative meetings between the Block Grant State Action Plan team and the AEAC, the perceptions of the survey from those with lived experience was a top priority. Cognitive interviewing was used with CRS local parent consultants (LPCs) as a validation approach to identify potentially offensive or problematic questions and ambiguities or other difficulties that could result in unintended responses. Cognitive interviewing sessions administered by the AEAC offered LPCs the opportunity to provide input on survey questions, flow, and comprehension. Due to limitations with recruitment, gaining youth feedback was a challenge, but AEAC staff were able to conduct two individual interviewing sessions to obtain feedback from YSHCN. Though the challenges with youth recruitment were disappointing, conducting sessions with LPCs allowed the team to obtain feedback from those who are parents/caregivers/or other relatives. Out of these sessions, an additional option to capture the youth experience by providing the option for parents/caregivers/or other relatives to respond on behalf of their YSHCN. Having this option opened up the survey to gain insight from YSHCN that may have limitations to completing the survey independently.
To ensure the survey was accessible to those at a variety of literacy levels, AEAC staff conducted a thorough review of the questions and adjusted the language to be no higher than an 8th grade reading level, thus providing opportunity for a wide range of respondents to participate. The Block Grant State Action Plan team in turn reviewed the suggested literacy changes to ensure they would not alter the survey questions in a way that did not adequately capture CRS goals and services.
Finally, regarding survey sample, the original intent was to survey individuals ages 21-26 who had already completed the Transition process. Due to challenges with recruiting individuals who were no longer receiving services through CRS, the team decided to survey individuals currently receiving services. As a result, the target population was changed to focus on individuals 19-21 who were receiving or had received services within the last two FYs to obtain more robust information on current services provided through CRS.
Priority Need – Increase family and youth involvement and participation in advisory groups, program development, policy- making, and system building activities.
ADRS and CRS have a deep and long-standing commitment to family and youth engagement and the principles of family-centered care. For nearly three decades this commitment has impacted every part of CRS from direct services to infrastructure building and population health work. CRS makes a significant investment in family partnerships by employing those with lived experience through the CRS Parent Connection Program and Youth Connection Program. See section III.E.2.b.ii. Family Partnership for additional information on family partnerships and family engagement through the Parent and Youth Connection Programs.
Recognizing the value of the National Family Voices Family Engagement in Systems Assessment Tool (FESAT) in assessing how well an organization supports family engagement in systems-level initiatives, CRS identified using the FESAT and its four domains of family engagement as part of the 2021-2025 Block Grant State Action Plan.
In Spring of FY 2021, CRS began the process of incorporating the FESAT and the four domains of family engagement in CRS activities through a training conducted by National Family Voices. Due to the continued impacts of COVID-19, the training was held virtually and included CRS State Office Staff, District Supervisors, and LPCs. National Family Voices representatives provided an overview of the four domains of family engagement, the FESAT, and resources available in the Family Engagement in Systems (FES) Toolkit. The training was recorded and made available for those unable to attend or those that wanted a refresher.
The next step was to administer the FESAT to determine a baseline score and identify domains for improvement. Administering the FESAT included distributing the tool along with a newly created CRS FESAT Purpose and Instruction document to individuals who would be participating in the consensus soring meeting. These individuals included CRS State Office Staff, District Supervisors, and Local Parent Consultants that had previously participated in the FESAT training. Each participant was instructed to score the FESAT based on their experience within CRS as an agency. These scores would then be discussed during the consensus scoring process.
UAB AEAC faculty and staff facilitated two consensus scoring sessions live via Zoom. Participants shared their initial scores for each question using the Zoom poll feature. The facilitator noted the variation in scores and encouraged discussion. Following discussion, polls were re-launched, and participants again submitted a score that reflected his or her opinion after hearing the discussion. Consensus was reached on the score for each question based on the majority score of the final (second) poll. The consensus discussion served as an opportunity for participants to understand each other’s points of view. It also raised awareness about the discrepancies in knowledge of policies and specific activities surrounding family engagement that exist between those participating and created an awareness about the need to share information more broadly.
Utilizing the FESAT Baseline Scoring document from UAB AEAC, the FES Toolkit, and the Family Voices Domain Fact Sheets as a guide, each District was tasked with creating a Family Engagement Quality Improvement Initiative Action Plan to include identifying goal(s) and objective(s) for FY 2022. The district supervisors were provided with the CRS Family Engagement Quality Improvement Initiative Guidance document, Action Plan Template and Instructions to assist in creating their plans. Initiatives were to be individualized and tailored to the needs of each district and the goal(s) focused on strengthening family engagement/partnerships within district activities. The vision for allowing the initiatives to be individualized is to create meaningful family involvement and incorporating a family-centered approach.
It was important that the initiatives be developed by a team of individuals that at a minimum included the district supervisor, LPC or individual with lived experience, social work representative, and a clinic specialist. In order to assist teams in creating their initiative, a series of emails were developed around topics related to strengthening family engagement. Topics included: patient-and family-centered care; improving families Quality of Life; and using Plan, Do, Study, Act (PDSA) cycles. In addition, a page was established on the ADRS SharePoint site to provide CRS staff with easy access to all FESAT and Family Engagement Quality Improvement Initiative documents.
Each district Initiative was carefully reviewed by the CRS assistant commissioner, CRS assistant director, SPC, and the MCH Coordinator. As this type of initiative was a new concept to some of the district supervisors the SPC and MCH Coordinator provided technical assistance to assist the teams with developing their action plans. Technical assistance included further expounding on the overall goal of the project, input into measuring objectives, and explaining the PDSA process. Six of the eight district plans were approved by the beginning of FY 2022. The others were approved within the first quarter of FY 2022. During this time, district supervisors were provided the opportunity to attend the 2021 National Family Voices Leadership Conference as an opportunity for them to enhance their knowledge of the importance of family engagement and family partnerships. This opportunity, among others, reinforces to CRS district level staff the program’s commitment to developing true family partnerships.
Priority Need – Lack of or inadequate access to health and related services, especially in rural areas and for the services identified as difficult to obtain.
SPM 3 – Increase the capacity of families to connect CYSHCN to the health and human services they require for optimal behavioral, developmental, health, and wellness outcomes through our Care Coordination Program.
The CRS Care Coordination Program provides a multidisciplinary approach to care coordination to ensure CYSHCN and their families connect to wrap around services they require for optimal behavioral, developmental, health, and wellness outcomes. CRS delivers services using a multi-disciplinary team approach and care coordinators are an essential team member. Working together the team provides coordinated services to improve the quality of life for CYSHCN and their families. Care Coordination is provided by licensed social workers and registered nurses located in the 14 community-based offices across the state. In addition, there are social work specialists trained in transition and traumatic brain injury (TBI) and these social workers manage caseloads related to their assigned specialty.
All CRS care coordinators provide support to help families navigate the complex system of care for CYSHCN. This support includes providing options and on-going need assessments for CRS medical and evaluation clinics, providing education regarding the health care needs, participating in school meetings and advocating for school-based services, exploring transportation options, locating community resources, making referrals for services, and helping families prepare YSHCN for transition to adulthood. Although there are limited transportation resources in the state care coordinators are able to electronically complete Medicaid NET request forms which helps expedite reimbursement for transportation costs related to medical appointments. CRS care coordinators also advocate for CYSHCN and their families within and outside CRS to improve the system of care. Through these advocacy efforts they develop a long-term relationship with the families built on trust and established individual goals.
Support also includes ensuring CYSHCN and their families have a medical home and that the CRS care coordinator is communicating regularly with the medical home. Although NPM 11 was not selected as part of the 2021-2025 action plan, CRS embraces the philosophy of providing family-centered, coordinated, ongoing comprehensive care within a medical home. Using a holistic approach, families are supported in working collaboratively with their doctors and other service providers to best meet the client’s needs. This support includes keeping the family informed of appointments, following up on recommendations by the medical home, and assisting with insurance needs. CRS care coordinators and LPCs assist families without medical homes to locate appropriate community primary care physicians (PCPs).
Alabama, like many other states have too few PCPs who serve CYSHCN and too few pediatric specialty providers, especially in rural areas. CRS care coordinators continue efforts to identify community PCPs willing to accept CYSHCN as patients. Local care coordinators work to build relationships with PCPs that serve CYSHCN to establish referral services through outreach activities and participating in community events. These outreach efforts also include sharing information regarding CRS services and the CRS referral process through regular office visits and phone calls. Building relationships at the local level ensure that care coordinators have the connections to facilitate referrals to those providers with experience in providing services to CYSHCN.
Expanding outreach activities and promoting awareness of the CRS Care Coordination Program within the medical community and among families of CYSHCN is a top priority. In order for staff to have the needed resources to carry out these activities the Block Grant State Action Plan team began efforts to create a Care Coordination Program fact sheet. In FY 2021, the team identified brochures from Colorado Department of Health, Children’s Health Home of Upstate New York, North Carolina Public Health, and North Carolina Medicaid to review and use as models. Using these examples, the team drafted verbiage and a proposed layout that was submitted to the ADRS Office of Information and Communication for development.
An additional key component of comprehensive care coordination includes a jointly developed plan of care. CRS care coordinators develop, maintain, and update a Comprehensive Plan of Care (CPoC). The CPoC is an annual assessment conducted with the family to identify needs/concerns, actions to address the needs/concerns, and a summary of services received. The plan is shared with families as well as providers. In FY 2020, the CRS State Care Coordination Program Specialist convened a group of CRS staff members that included care coordinators, social work specialists, physical therapists, Computer Services, nurses, and State Office staff including the SPC to focus on improving the CPoC. Major changes that resulted from the workgroup include allowing a multidisciplinary team to document in the CPoC and the ability to automatically send the plan of care to the child’s medical home. The group also focused on ensuring the CPoC is jointly developed with the family, has value for the family, and is shared with the caregiver.
The following two quotes illustrate the impact of the CRS Care Coordination Program in FY 2021:
One mother describes their experience with their CRS Care Coordinator as, “CRS has been such a blessing to our family. As first-time parents, learning that our new, precious baby had a progressive disease was so very heartbreaking. Not only were we worried about his health, but also the cost it would take to keep him healthy. Very early on in our medical journey, I met our Care Coordinator. She has been so helpful in walking us through the ways CRS can help us with the cost of his care, and she has also helped us take advantage of other available grants and programs, too. Every question I have ever asked over the years has been answered in a professional manner, and many of those answers have been repeated time and again without making me feel like a nuisance. She has been incredibly organized and has never let any coverage expire. She even offered her support when I met with the school administration to enroll my son in kindergarten. CRS has been the biggest blessing for our family, and I don't know how we would be surviving this medical journey without them.”
One Care Coordinator shared the following experience that illustrates the impact of CRS Care Coordinator, “We had a child that received a DHR referral because the family was not consistent to their appointments at Children’s of Alabama. The family did not have reliable transportation for a long drive, money to accommodate a trip, and there are multiple young children in the home. Once our CRS office became involved, the family proved that it was not a lack of desire to care for their child, but a lack of resources. They have been consistent with clinic attendance and utilize care coordination services routinely. There have been times that the family has had to travel for surgery and had to rely on a family member to transport. Their CRS Care Coordinator helped with linking the family to lodging through the revolving fund and accessing the Med NET program. The DHR case has been closed.”
In order to assess the effectiveness of the CRS Care Coordination Program and determine those that report receiving comprehensive care coordination, CRS collaborated with the AEAC to develop a survey aimed at capturing the perception and experiences of those receiving Care Coordination services. The overall goal of the survey is to collect vital information from families that could improve CRS Care Coordination services. In an effort to develop a robust instrument, the team began reviewing existing literature and identifying surveys to aid in the development of a potential framework. Through that search, two surveys were identified, reviewed, and used to inform question development and survey design: Pediatric Integrated Care Survey (PICS) and the Family Experience of Care Coordination (FECC) Survey. In regard to survey design the same steps were followed as described above in NPM 12 regarding the Transition survey. An exception being there were no youth interviews conducted as the target population for the Care Coordination Survey was families who had received services within the last two fiscal years.
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