Hogan | 12-23




Positive Approaches Journal - Volume 2 Title

Volume 10 ► Issue 3 ► November 2021



Going Home: Children with Medical Complexities Cross System Successes

Heidi Arva & Jennifer Harniman-Crangle, LSW


Abstract

Early in the summer of 2018, interest around a new initiative emerged within the Office of Developmental Programs (ODP). The intent of the initiative was to support children with medical complexities residing in pediatric facilities by exploring our current system, learning more about existing services, and collaborating with other systems within the Department of Human Services (DHS) to support children to be able to return home to their families rather than grow up living in facilities. As the work began it became apparent that this initiative would require the support and involvement of multiple systems to achieve success.

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Identifying the need

The initiative to support children with medical complexities began with the recognition that although Pennsylvania’s Office of Developmental Programs (ODP) was licensing some pediatric facilities, the details of their care needs were unknown to the office. Although many of these children would be eligible for services in the ODP system, they were not yet registered with county Administrative Entities (AE) and therefore ODP did not have individualized support plans for each child. We did not know what was important to them, their likes and dislikes, medical and developmental needs, their goals, and so on. It was identified that several of the children had been residing in facilities for years. Children were growing up in facilities.

The Office of Developmental Programs believes that everyone should have an opportunity to live an Everyday Life1. “People with disabilities have a right to a life; a life that is no different than that of all other citizens. 1” Through this we value what is important to people; their rights, responsibilities, relationships, and opportunities to have a valued role in their community and contribute to society in a meaningful way.1

Although most individuals supported by ODP are adults, we hold these values not just for adults, but for all people across the entire lifespan.  Children growing up in facilities is not consistent with ODP values.

It was in these early stages of the initiative that the work and recommendations from the Imagine Different Coalition were reviewed2.  The Imagine Different Coalition is a group of parents, advocates, and professionals who are working towards supporting children with disabilities to have the opportunity to grow up in family homes. They are solution driven and have been an integral part of the initiative to support children with medical complexities within Pennsylvania.  It was through the Imagine Different Coalition that we were introduced to a program in Texas which transitions children with medical complexities from congregate care settings into family homes. This program, known as EveryCHILD Inc., was used as a model as we began to explore ways to support children with complex medical needs in Pennsylvania3.

To learn more, we collaborated with other DHS offices to determine if we were supporting children with medical complexities and their families in a wholistic way. This cross-system collaboration created a unified approach to conceptualizing the needs of individuals and families while also exploring ways to meet those needs. In order to wholly support children, we need to not only support their medical and physical needs, but also provide them with the opportunity to grow up in a family with caregivers who love and support them, caregivers with whom they feel a special bond, and caregivers who can offer them comfort and nurture. We need to work together as a system to determine how we can improve efforts to provide families with the resources, training, supports, and services to feel confident and comfortable with supporting their children at home.

It was apparent that silos existed among different offices across the system who were independently supporting specific needs of children with medical complexities, including those residing in pediatric facilities. Within DHS alone there are two different offices that license pediatric facilities: ODP and Pennsylvania’s Office of Children, Youth, and Families (OCYF). Pennsylvania’s Office of Child Development and Early Learning (OCDEL) provides and oversees Early Intervention services for children in facilities while the OCYF has guardianship of several children within facility settings. Pennsylvania’s Office of Medical Assistance Programs (OMAP) funds the nursing and medical care provided to children during their stay in facilities. And finally, Pennsylvania’s Office of Mental Health and Substance Abuse Services (OMHSAS) oversees the mental health and behavioral health services for all children. In recognition of the different silos existing to serve this population of children, we realized that until we were able to come together and collaborate our efforts in support of the different aspects of the children’s lives, we were not doing our best to support the “whole” child.

It was around this time that former ODP Deputy Secretary, Nancy Thaler, began her role as the Special Assistant to the Secretary of the Department of Human Services. Within this role, Nancy focused on the children with medical complexities who were being served within Pennsylvania. She coordinated a DHS workgroup which included all the offices supporting children with medical complexities. The purpose of the workgroup was to discuss key challenges and diagnoses that have led to the placement of children in pediatric facilities. This workgroup explored the current system structure, discussed all services that are available to support children, and identified any gaps within the larger system. Soon after this workgroup was formed, Governor Tom Wolf issued an executive order that made a commitment to support vulnerable populations, which included children with medical complexities. This executive order strengthened our “why” and the importance of the work that we were embarking upon.

DHS staff acknowledged the importance of understanding the needs of children with medical complexities and their families and sought direct feedback from them regarding their vision around needs for system change. Members of the DHS workgroup connected directly with individuals to hear their personal stories and made a commitment to seek out the voices of families.  Representatives from ODP traveled across the state to visit existing providers who support children with medical complexities, including some pediatric facilities. We met with a wide range of individuals at the facilities including social workers, medical directors, nurses, and direct care staff. Representatives from the DHS workgroup also took time to meet face to face with families and spoke directly to children and their caregivers to hear and learn from their unique experiences.

There were four themes identified including a) a need for someone who was familiar with and understood all the different systems supporting children, b) a responsibility to support behavioral needs of children with medical complexities, c) a challenge to ensure that medical supports and behavioral supports were coordinating services by joining together to meet the complex needs of children, and finally d) a need to support families to overcome the barriers to going home.


Filling the gaps and overcoming barriers

The next phase of this initiative was to determine how to fill the gaps that were identified by the DHS workgroup. There was a risk of losing momentum and a need to ensure that the recently established collaborative relationships between DHS offices and others within the system were maintained to support one another as well as hold one another accountable to continue the work around this population. At the end of 2019, the DHS Transition Home Team was organized to provide an opportunity for state offices to discuss and identify barriers that children and families face around living together at home and strategize any necessary changes within the system to help overcome those barriers. The Transition Home Team consisted of representatives from the ODP, OMAP, OCYF, OCDEL, OMHSAS, Pennsylvania’s Office of Long-Term Living (OLTL), DHS Policy office, and the Family Facilitator. To establish continuity across the offices for the purpose of this team, lead contacts were identified within each of the participating DHS offices. Having clarity on who to contact within each office has been a great service to the collaboration and increases efficiency when overcoming obstacles.

We again acknowledged the need to involve different levels when seeking to overcome barriers within the system. This required ongoing investment and input from stakeholders and those at the community and provider level who are on the ground directly supporting children and families.

Using the EveryCHILD Inc. model from Texas, the PA Family Facilitator role was developed to help families and children with complex medical conditions move back into family life3. In 2020, ODP contracted with Philadelphia Coordinated Health Care (Pennsylvania’s Southeast Region’s Health Care Quality Unit) and hired Jennifer Harniman-Crangle, LSW as the Family Facilitator for Pennsylvania4. The purpose of this position is to partner with those at the community and individual level including medical providers, support teams, and other community networks to ensure that the child has a smooth return home. A contract was established with EveryCHILD Inc. to provide technical assistance and support to the Family Facilitator as this role was developed in Pennsylvania3.

The Department of Human Services offices have also collaborated with those at the county and community levels including Managed Care Organizations (MCO); Early Intervention (EI) Specialists; Children, Youth, and Families (CYF) case workers; pediatric facility providers; schools; mental-health providers; county Administrative Entities (AE); and waiver providers. There is not only an effort to raise awareness around this population and build capacity around supporting the whole child, but also to amend existing services and contracts to fit the needs of children with medical complexities. A DHS-wide bulletin was developed to ensure that all children across the different systems who are potentially eligible for ODP services are registered within the county system.

In recognition of the need to stay connected with stakeholders, ODP has presented information on the initiative and provided updates to Pennsylvania’s Information Sharing and Advisory Committee (ISAC) and has held regularly scheduled meetings with the Imagine Different Coalition.

The foundational work at the state and community level was established to ensure that we are wholly supporting children with medical complexities in homes within their community. This success relies on the ongoing cross systems collaboration for each individual. The following example of Maddy and Michael perfectly illustrate the importance and depth of cross system work.

Case Example

The Clients

Maddy (20 years old) and Michael (19 years old) are siblings who were the first discharge connected to the Family Facilitator project5. The siblings were in the custody of OCYF for over ten years. The parental rights were terminated and there were no other family members who were able to provide care. Maddy and Michael were placed in a pediatric nursing facility and remained together throughout that time, however, they were moved between three different facilities.

Maddy is an amazing young adult with a sassy sense of humor that she communicates through her eye rolls and smile. She loves to be pampered and always wants to look her best.

Michael is a strong young man with amazing potential. He wants to direct his day and enjoys being outdoors. He has preferences that he clearly communicates through vocalizations and his body language.

The Problem

Prior to the development of the family facilitator role, it was assumed that at age 21 each sibling would move into a group home in the community. Being that they are a year apart in age, it was very unlikely that they would end up together. Ensuring that these two siblings remained together was paramount and was important to the Community Umbrella Agencies (CUA) worker who had a substantial relationship with them and to Maddy and Michael. There were times when they were separated due to hospitalizations, and they were both observed looking for each other.

The Vision

In June of 2020, a referral was made to the Family Facilitator by the Managed Care Organization (MCO) Special Needs Case Manager. The conversation started with, “I don’t know if this is a case you can help with but…”. The case manager shared that in her quarterly contacts with the CYF worker she was aware that her client had a sibling, and that the CYF worker (who supported both Maddy and Michael) was very worried about finding a home for the two of them and felt very uncertain about their future.

In a follow up call with the CYF worker, we discussed the history and the problem. We focused on the vision which was to keep Maddy and Michael together and find them a permanent home, not a placement, of which they have had many. We utilized the Charting the LifeCourse Trajectory and Star of Support to create a map that would get this group of supporters on working towards the same outcome6. The CYF worker later shared that during that initial call she started to feel hopeful and excited about the siblings’ future.

Conversations with Maddy and Michael were challenging since this was during the height of the COVID-19 pandemic. Seeing them in person was challenging, so all communication happened remotely using FaceTime. The CYF caseworker talked to the siblings about the move and Maddy and Michael did their best to share their thoughts and feelings through their non-verbal communication.

Systems and advocates

Michael and Maddy’s team started out small but quickly expanded. A core group of four people representing four different systems (ODP, Managed Care Organization, OCYF and the facility) grew to twelve systems totaling eighteen people joining regular meetings: three state offices (ODP, OMAP, and OCYF), County Intermediate Unit, provider agency, medical community, pediatric facility, DHS nurse, County Court, County CYF, Supports Coordination, and County Administrative Entity. Everyone who came to the table were committed to creating a great life for Maddy and Michael, which also meant we had to agree on what that life would look like.

While planning for Maddy and Michael’s discharge, team members were able to ask questions about the vision for the siblings so that we all had a clear understanding of what we were creating. We asked people to come with an open mind and be willing to develop a knowledge base of services in systems outside of their own, and to weave together supports.

Prior to the development of this project the most likely outcome would have been for Maddy to move when she turned 21, and Michael to continue to live at the pediatric facility. When he turned 21, he would most likely move to a different group home, or maybe even a nursing home. By including all the systems supporting these siblings from the beginning of these efforts, we were able to create a solution in which they could stay together, forever; while reducing loss and trauma, increasing stability, predictability, and happiness. We needed each and every team member to make this a reality.

Through the collaboration of this team, guided by the Family Facilitator, and their willingness to come together, learn about other systems, and devote time and effort to the vision versus a placement, Michael and Maddy now live in the community together!

The Present

Three years have passed since some of those early conversations around reviewing how children with medical complexities are supported in PA. Within that time there has been great movement due to the cross-system efforts and relationships that have been established in an effort to consider ways that we can become even better in PA at supporting the needs of children with medical complexities. When considering the cross-systems work involved with this initiative and the ability to unite siloed offices and programs it is apparent that this has been nothing less than a tremendous accomplishment within PA.




References

1.      Pennsylvania Department of Human Services, Office of Developmental Programs. Everyday Lives: Values in Action: 30th Anniversary Edition. 2021.

2.      Imagine Different Coalition.  PEAL Center and Pennsylvania Developmental Disabilities Council. 2016.

3.      EveryCHILD Inc. Contracted with the Texas Health and Human Services Commission.  https://everychildtexas.org/.  Created July 2000.

4.      Southeastern Pennsylvania Heath Care Quality Unit (HCQU): Philadelphia Coordinated Health Care (PCHC) a core program of The Philadelphia Mental Health Care Corporation (PMHCC).  1999.

5.       Names and other identifying information have been changed.

6.      Charting the LifeCourse framework. University Missouri -Kansas City Institute for Human Development website. https://www.lifecoursetools.com/lifecourse-library/lifecourse-framework/. Published 2010. Accessed August 19, 2021.



Biographies

Heidi Arva is a Clinical Consultant for the Office of Developmental Programs – Bureau of Supports for Autism and Special Populations. Prior to working at ODP, she spent over 14 years providing direct support to children and families. Since 2018, she has been the lead within ODP working on the department wide initiative to support children with medically complex needs.

Jennifer Harniman-Crangle, LSW joined Philadelphia Coordinated Health Care (PCHC), SE Region’s Healthcare Quality Unit, in January 2020 as Pennsylvania’s first Family Facilitator.  Jennifer is a licensed social worker with over 20 years of experience supporting families in Pennsylvania across the lifespan.

Contact Information

Heidi Arva

Clinical Consultant, Office of Developmental Programs

c-harva@pa.gov

717-395-9549

Jennifer Harniman-Crangle, LSW

Family Facilitator, Philadelphia Coordinated Health Care (PCHC)

jharnimancrangle@pmhcc.org

267-951-3433