NPM 11 - Medical Home (The percent of children with special health care needs having a medical home) (CSHCN Survey)

 

NOM 17.2 - Percent of children with special health care needs (CSHCN), ages 0 through17, who receive care in a well-functioning system.

 

Strategies: 1) The State CSHCN program staff, including the parent consultant, will provide health care services that encourage the family to share in decision making and provide necessary feedback on services provided; 2) The state CSHCN program staff, including the parent consultant, will maintain and update a comprehensive, integrated plan of care that has been developed with the family and other members of a team that addresses family care and that is shared with families and among and between providers; 3)The state CSHCN program staff, including the parent consultant, will link families without a medical home to appropriate community primary care physicians (PCP); 4) The state CSHCN program staff, including the parent consultant, will establish an EHR system to increase consistent communication with primary care physicians and sub- specialists who provide care for CYSHCN; 5)The state CSHCN program staff, including the parent consultant, will partner with Medicaid RCOs or managed care companies to receive appropriate referrals to facilitate services for CYSHCN; and 6)The state CSHCN program staff, including the parent consultant, will collaborate with FVA, Family to Family Health Information Center Grant, the Alabama Chapter of the AAP, and ACHIA to provide medical home and family centered care training to providers.

 

Objectives (NPM 11):

1. By 2020, increase, by 5 percent, the number of CYSHCN who have access to a medical home.
2. By 2020, increase, by 5 percent, the number of CYSHCN who report that they have a comprehensive plan of care.
3. By 2020, increase, by 5 percent, the number of PCPs who provide care to children and youth with special health care needs.
4. By 2020, increase, by 10 percent, the number of contacts made between CRS staff and Medicaid RCOs or managed care company representatives.
5. By 2020, increase, by 5 percent, the number of activities to support CYSHCN and their families in self-management of the child’s health and health care.
6. By 2020, increase, by 5 percent, the number of providers who receive medical home and family centered care training.

(See Activity Sheet for NPM 11)

 

ESMs:

11.1 - Percent of enrollees in the State CSHCN program with a comprehensive plan of care.

 

11.2 - Percent of providers receiving education/training about family-centered care.

 

Direct Services:

 

CRS maintained 14 clinic sites to provide clinical medical services, care

coordination, and family support services to enrolled CYSHCN.

 

CRS continued efforts to maintain and enhance the EMR. CRS continued efforts to develop an EHR that will interface with Alabama’s One Health Record. The One Health Record® system was created as Alabama’s health information exchange (HIE).

 

CRS staff held 3,440 medical and evaluation clinics. CRS staff completed 9,713 current plans of care for enrolled CYSHCN.

 

CRS staff made 529 hospital visits, 637 home visits, and 1,386 school visits to provide enrollment and follow-up care to CYSHCN.

 

CRS staff served 406 clients without insurance coverage.

 

CRS enrollment forms were made available on the public website; and referrals were accepted via phone, email, fax, or hard copy.

 

CRS continued to partner with Hudson Alpha Institute for Biotechnology to provide genetic services to enrolled CYSHCN. This partnership provides unique and cutting-edge medical care for CYSHCN and their families in the state of Alabama by expanding access to genomic medicine.  

 

Enabling Services:

CRS continued to provide clinic services and respond to requests for information and referral for CYSHCN and their families. See www.rehab.alabama.gov for CYSHCN success stories.

 

CRS maintained and enhanced its EMR. The EMR task force held regularly scheduled meetings regarding the EMR components that are unique to the CSHCN program. Updates included modifying EMR software for CRS to capture an entire report of visit (ROV) for CRS clinics. This new area in CHARMS software for capturing data was designed by specialties such as: audiology, neurology, feeding, PT, OT, etc. In addition, the capability was added to our electronic health record for physicians working clinics to be able to access the CHARMS software via Citrix XenApp.

 

CRS continued efforts to develop an EHR that will interface with Alabama’s One Health Record. One Health Record® system was created as Alabama’s HIE.

 

CRS continued efforts to identify community PCPs willing to accept CYSHCN as patients. CRS staff assisted families without medical homes to locate appropriate community PCPs. CRS staff maintained a database of PCPs of CRS enrollees to facilitate identification of local providers with experience in providing services to CYSHCN.

 

CRS through the CMC CoIIN project designed and implemented a Shared Plan of Care (SPoC). As part of the project the SPoC is being tested through a Plan-Do-Study-Act cycle and modified as needed.

 

CRS program staff conducted hearing screenings at community health fairs, schools, daycare centers, and Migrant Head Start programs.

 

CRS program staff provided care coordination, referrals, translation, and outreach to CYSHCN.

 

CRS provided transportation assistance to eligible CYSHCN.

 

Public Health System and Services:

 

In FY 2019, Medicaid implemented a consolidated Care Coordination system through a Section 1915 (b) Waiver, which resulted in the formation of ACHN. CRS care coordinators have developed a close partnership and collaboration with the care coordination staff at the ACHN regional offices. 

 

CRS, in partnership with FVA and the F2FHIC, provided education on family-centered care to youth, families, and professionals at the annual Partners in Care Summit.

 

CRS partnered with ACHIA, The UAB Pediatric Pulmonary Center, FVA/F2FHIC, and AL AAP to provide medical training to providers, staff, and families of CSHCN.

Constructs of a Service System for CYSHCN

 

The interagency group, comprised of the CRS Advisory Committee, key state-level stakeholders, youth with special health care needs, and families of CYSHCN (through the advisory committee, surveys, and focus groups), will continue its ongoing participation in the CYSHCN needs assessment process.

 

State Program Collaboration: CRS

 

Many collaborative mechanisms continued to exist at the state level to coordinate state services available to CYSHCN. CRS continued to represent the Title V CSHCN Program in numerous efforts; discussion of which follows.

 

Support for Several Programs: CRS

 

CRS continued to collaborate with UAB Sparks Clinic, Alabama’s LEND Program, on behalf of CYSHCN. CRS provided Title V funding support to FVA and the F2FHIC which provides education and training for clients, families, and health professionals including physicians.

 

Alabama Children’s Policy Council

 

Under the coordination of the Department of Early Childhood Education, each local Children’s Policy Council (CPC) is chaired by the county’s juvenile judge and has members from a diverse cross-section of public and private individuals interested in the general needs of all children and families in the state.

 

The ADRS Commissioner continued to serve as a member of the State Children’s Policy Council, and ADRS staff members continued participation in local Children’s Policy Councils in all 67 counties within the state. CRS staff provide expertise related to the unique needs of CYSHCN during CPC meetings. This partnership continues to raise awareness of the importance of the specialized needs of CYSHCN and the implications that these needs have for resources in a local community. It also supports the inclusion of CYSHCN at the local level.

 

Alabama Head Injury Task Force

 

ADRS continued its role as the lead state agency for serving individuals with traumatic brain injury. Task force members include public and private agencies.  This group planned for the development and implementation of a statewide, community-based system of services for children and adults with traumatic brain injury. Data sharing, financial issues, interagency training, and coordinated policies were addressed by the task force.

 

Alabama SCHIP

 

CRS continued to participate both as a provider of ALL Kids Plus services and as an advocate for the unique needs of CYSHCN in policy development for general benefits packages. CRS continued meeting on an as-needed basis with ALL Kids staff to discuss program and policy issues likely to affect CYSHCN.

 

CRS helped its 310 ALL Kids enrollees with annual renewal as needed. CRS also used Title V funds to pay insurance premiums for coverage accessible through employment, the Consolidated Omnibus Budget Reconciliation Act and ALL Kids for 28 enrolled clients.

 

Alabama Medicaid

 

CRS continued its interagency agreement with Medicaid to provide Children's Specialty Clinic Services. CRS is a direct provider with Medicaid for audiological services, hearing aids, and related supplies, thereby providing better coordination of these services for Medicaid-eligible CRS clients. CRS reviewed all statewide requests to Medicaid for augmentative communication devices (ACDs) and housed all Medicaid prior authorization requests for ACDs. CRS is the only provider of medically necessary orthodontia for Medicaid recipients. CRS works closely with Medicaid’s Dental Director regarding payment for orthodontia services. Members of the CRS state office staff, including the SPC, met quarterly with Medicaid staff members to discuss program and policy decisions likely to affect CYSHCN.

 

Family Voices of Alabama

 

CRS continues to maintain a strong partnership with FVA, home of Alabama’s F2FHIC. FVA members are active participants in both CRS’s State and Local Advisory Committees. The FVA co-director is the CRS State Parent Consultant. CRS continued partnering with FVA and the F2FHIC on programmatic and grant activities. FVA provided support for youth and families of CSHCN to participate in CRS-sponsored activities including needs assessment activities. CRS, in collaboration with FVA and the F2FHIC, provided medical home and family centered care training to approximately 246 providers.

 

Alabama Parent Education Center

 

The Alabama Parent Education Center (APEC) provides services and support to assist families particularly those underserved including minority, low-income, and those with children with disabilities. APEC provides families with the training, information, and support they need to help them ensure that their children become productive, well-educated citizens. This group provided families with training, information and support through programs such as the Parent Training and Information Center, the Youth Transition Project, School Improvement Services, Programs of Adult and Community Education, and Fathers Forward. APEC staff members continued to provide training for CRS Local Parent Advisory Committees.

 

State Support for Communities: CRS

 

Community support was provided through several local planning processes; discussion of which follows.

 

Local Children’s Policy Councils

 

As previously noted, ADRS staff continued to participate in each county’s Local Children’s Policy Council to provide a voice for CYSHCN in needs assessments, community planning, and resource mapping activities conducted by the CPC.

 

CRS Local Parent Advisory Committees

 

The LPCs each coordinate a LPAC. These groups offer families the opportunity to provide input to policy and program changes in CRS and to interact with local staff members. LPACs are opportunities for community partners to share information with families. They also allow for families to provide mutual support from other families in their area. Representatives from each LPAC committee make up the State Parent Advisory Committee, which continued to advise CRS administrators on program and policy issues concerning family-centered care.

 

CRS Local Offices

 

Each district office continued its support of local, district, and regional health planning initiatives. Staff members served on local councils that address health and youth and children's issues. CRS Title V MCH Block Grant funds supported their involvement financially and through performance standards. Additionally, each district office functioned as a powerful resource network within its local community, responding to numerous requests for information regarding CYSHCN and available services.

 

Coordination of Health Components of Community-Based Systems: CRS

 

Coordination within community-based systems was achieved through several means; listing and discussion of which follows:

 

Maternal and Child Health

 

As previously discussed, CRS administrative staff members and program specialists met quarterly with staff from Family Health Services and several other MCH stakeholders, to assure coordination of initiatives.

 

Memorandums of Understanding with Tertiary Children's Hospitals

 

Memorandums of understanding were maintained between CRS and the two-tertiary care pediatric hospitals in the state and are essential to the coordination of health components of community-based systems.

 

The Alabama Hemophilia Program

 

This program continued to be administered by CRS. Persons of any age with bleeding disorders are eligible to participate. Treatment centers in Birmingham and Mobile provide evaluation, treatment, patient education, care coordination, and allied health services. CRS received MCHB funds through a contract with Hemophilia of Georgia to promote comprehensive care for this population.

 

Coordination of Health Services with Other Services at the Community Level

 

The state made great advances toward coordinating community-based services for CYSHCN through the agreements with tertiary-level providers, credentialing of local vendors for allied health services, and service agreements with community providers and hospitals. The development of further public and private partnerships continues.

 

CRS, as a division of ADRS, is co-located with EIS, VRS, and the SAIL Program in most locations throughout the state. This relationship continues to promote the coordination of program planning and service delivery at all levels.

 

CRS staff members volunteered their time to provide their specialized skills for various camps, including Camp G.I.F.T.E.D., a theater camp for young people with special needs hosted by Alabama State University.

 

CRS promoted the development of community-based systems of care through its network of 14 district offices, which work with every county in the state to enhance local services for CYSHCN.

 

EHDI Learning Community

 

CRS audiologists participate in the ADPH EHDI learning community to increase awareness of the Joint Committee on Infant Hearing guidelines.

 

Supporting families of Deaf/Hard of Hearing Children/Youth

 

The SPC worked with AL’s Early Intervention System Director to develop a process where all families who are referred to EI after a second-tier hearing screen will be asked if they would like to be connected to a LPC for family to family support, which will include the newly developed Guide By Your Side program which is a project of Hands & Voices.

 

Quality Assurance and Systems Development: CRS

 

Quality assurance and systems development activities by CRS continued in FY 2019.

 

Formal monitoring procedures for clinical sites and Quality Care Guidelines for specific diagnostic conditions were accomplished by the Quality Improvement Teams, which included the local parent consultant in CRS districts. The teams continued to meet periodically to identify service delivery areas that need improvement and to formulate an improvement plan to address that need.

Standards of care implemented for each specialty medical and evaluation clinic were reviewed and updated as needed. The CRS policy and procedure manual and the CRS bill payer manual were updated as needed. These manuals are available on the ADRS internal website.

 

A credentialing process was used for enrolling specialty physicians, dentists, allied healthcare providers, and durable medical equipment providers. Clinic and care coordination dictation were regularly reviewed by the appropriate staff therapist, program specialist, and medical consultant to ensure quality and appropriateness of coding for reimbursement.

 

Staff performance appraisals, based on pre-identified responsibilities and expected results, were conducted biannually.

 

CMC CoIIN

 

In FY 2019 CRS was in Year 3 of the 4-year HRSA funded Collaborative to Advance Care for Children with Medical Complexity. CRS is the lead for the Alabama CoIIN initiative. The goal is to increase services from a single locus of care management (a medical home) and utilization of a Shared Plan of Care. The medical home can be either the University of South Alabama Pediatric Complex Care Clinic or with community-based pediatric providers. Past year accomplishments include hiring a CRS Care Coordinator to provide Care Coordination services onsite at the University of South Alabama Pediatric Complex Care Clinic. These Care Coordination services had a positive impact on the quality of life for the Children with Medical Complexity and their families. As previously mentioned, a SPoC was developed in conjunction with the staff at the University of South Alabama Pediatric Complex Care Clinic and CRS as well as input from families utilizing the SPoC.

 

NPM 12: Transition (The percentage of children with special health care needs who received services necessary to make transitions to adult health care). (CSHCN Survey)

 

NOM - Percent of children and youth with special health care needs, ages 14-21, who receive transition services.

 

Strategies:  1) The state CSHCN program staff, including the parent consultant, will develop a policy that describes the process for transition preparation and planning for YSHCN and their families as they prepare to move from pediatric to adult health care. The policy will be shared with clinic staff, YSHCN, and their families. 2) The state CSHCN program staff, including the parent consultant, will maintain an electronic medical system for identifying transitioning YSHCN, ages 14-21, to track receipt of each of the Six Core Elements of Health Care Transition. 3) The State CSHCN program staff, including the parent consultant, will conduct a transition readiness assessment at age 14 using a standardized tool, administered periodically, and discuss needed self-care skills and changes in adult-centered care. 4) The state CSHCN program staff, including the parent consultant, will incorporate transition planning into their existing plan of care, starting at age 14, partnering with youth and families in developing transition goals and preparing and updating a medical summary and emergency care plan. 5) The state CSHCN program staff, including the parent consultant, will identify adult providers to accept CRS patients and will complete a transfer package (including the transition readiness assessment, plan of care, medical summary and emergency care plan) for youth leaving CRS and will communicate with the new adult provider/subspecialist confirming transfer completion and the need for consultation, with health care providers and community systems. 7) The state CSHCN program staff, including the parent consultant, will obtain feedback on the transition experiences of young adults ages 21-26.

 

Objectives (NPM 12):

1. By 2020, increase the number of clinic staff, transitioning YSHCN and families who received a written transition policy to Level 2.
2. By 2020, increase the number of transitioning YSHCN in the CRS Program identified via an electronic system to Level 3.
3. By 2020, increase the level of transition of YSHCN in the CRS Program who received transition preparation and planning to Level 3.
4. By 2020, increase the number of YSHCN in the CRS Program who attended teen transition clinic.
5. By 2020, increase the number of young adults who provided feedback about their experiences when transitioning to adult services to Level 3. (See Activity Sheet for NPM 12)

 

ESMs:

12.1 - Percent of YSHCN enrolled in State CSHCN Program with a transition plan in place.

 

12.2 – Percent of the State CSHCN Program clinics who adopt the Six Core Elements of Health Care Transition.

Direct Services:

 

CRS continued to utilize the customized transition policy from the Six Core Elements of Health Care Transition (www.GotTransition.org). CRS continued to post the transition policy at all fourteen clinic sites (See picture below).

CRS continued to support staff social work positions focused on transition. At 14 years of age, CRS youth are transferred to their district's Social Work Transition Specialist.

 

CRS staff, including local parent consultants and transition social workers, received continued education on how to use the Six Core Elements of Health Care Transition in CRS teen transition clinics and with other transition age YSHCN.

 

CRS staff completed the transition readiness assessment tool on 174 clients, age 14 and older. CRS staff identified 367 enrolled youth, age 14, via its current electronic medical record system. CRS staff saw 41 YSHCN in teen transition clinics.

The ADRS Continuum of Transition focused on strengthening the continuum of services provided by each division. Transition liaisons were identified from both divisions for each district office, and ongoing training was provided.

 

CRS care coordinators completed 9,713 plans of care for enrolled YSHCN. The plan covered health/medical issues, educational needs and planning, developmental and independent living skills, and future planning issues. The plan is updated annually with families and youth.

 

CRS State Office Staff, including the State Office Parent Consultant, worked with the CRS Program staff to modify strategies and objectives for NPM 12.

 

Enabling Services:

 

CRS program staff continued providing care coordination, translation, and referral services to transitioning YSHCN. CRS provided transportation assistance to enrolled, eligible YSHCN. Program staff participated in transition team meetings with local school districts and participated in High School Transition Fairs to educate families and community members about CRS transition services.

 

CRS program staff have assisted with planning and participating in Transition Resource Fairs in their local communities to promote awareness to students, caregivers, and educational, medical, and other community stakeholders. Some of the topics included navigating complex medical transitions, becoming a better self-advocate, transitions to high school and college, Medicaid waivers, and employment.

 

CRS Social Work Transition Specialists attended the Alabama Transition Conference. This yearly conference is a joint 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. 

 

CRS supported youth who have leadership training through the annual Alabama Governor's Youth Leadership Forum (YLF).

 

CRS has two part-time Youth Consultants that work to increase outreach to youth and young adults across the state. Both YCs are consistently using social media to increase connections with YSHCN in Alabama and have also created a page on the ADRS SharePoint site to share youth resources with CRS staff.

 

Public Health Systems and Services:

 

Coordination of Health Services with Other Services at the Community Level

 

CRS staff continued to work individually with YSHCN to ensure linkages with adult healthcare providers and community service systems. CRS continued to fill vacant social work staff positions focused specifically on transition. These specialists continued to provide targeted, comprehensive transition services to help CRS-enrolled youth and their families plan for adulthood.

 

CRS had 144-page views (hits) on its program website for the AMCHP Standards for Systems of Care for CYSHCN. Version 2.0 was uploaded to the program website.

 

CRS adopted the Six Core Elements of Health Care Transition used with clients attending CRS Teen Transition Clinics and with transition YSHCN (www.GotTransition.org).

 

CRS and VRS staff have continued to collaborate on issues and challenges in the referral and transition process. CRS and VRS staff continued to meet and hold conference calls, assuring that YSHCN receive timely and appropriate services to assist them locally with health, education and employment- related goals.

 

SPM 1: Percent of CYSHCN and their families who report that they share in decision-making and partnerships with their health care providers.

 

State Priority Need: Family professional partnerships for CYSHCN.

Measure: Promote shared decision-making and partnerships between families and health related professionals.

 

Strategies: 1) The state CSHCN program staff, including the Parent Consultant, will develop and provide training for families of CYSHCN on how to improve communication with their health care providers. 2) The state CSHCN program staff, including the Parent Consultant, will collaborate with family organizations and other federal, state, and community partners to provide health care services that encourage families to share in decision making and provide feedback on services provided.

 

Objective

 

By 2020, increase by 5 percent, the percent of families with CYSHCN who report that they shared in the decision making at all levels. 

 

CRS identified increasing the capacity to promote shared decision-making and partnerships between families and health and related professionals as a state priority for 2016-2020. This priority addressed several activities in each of the following two areas:

1. CRS/CSHCN Data Collection and Support
2. FVA/F2FHIC

 

See CSHCN Data Action Plan for SPM 1 2016-2020 Five-Year Needs Assessment in the attachment section.

 

CRS/CSHCN Data Collection and Support:

 

CRS maintained and enhanced its EMR. The EMR task force held regularly scheduled meetings regarding the EMR components that are unique to the CSHCN program. Updates included modifying EMR software for CRS to capture an entire ROV for CRS clinics. This new area in CHARMS software for capturing data was designed by specialties such as: audiology, neurology, feeding, PT, OT, etc. In addition, the capability was added to our electronic health record for physicians working clinics to be able to access the CHARMS software via Citrix XenApp.

 

CRS continued efforts to develop an EHR that will interface with Alabama’s One Health Record. One Health Record® system was created as Alabama’s HIE.  Developing this interface will be of great benefit to CRS clients, their families and program staff. 

 

FVA/F2FHIC:

 

CRS LPCs in collaboration with FVA and the F2FHIC collected data about the needs expressed by families in the state and the types of information shared with them. CRS continues to use this data to help assess the needs of CSHCN and their families. CRS collaborated with FVA in supporting the Partners in Care Summit, a project of the F2FHIC.