Take Charge! Medically based parent education & training.

What if every child with medical complexity could be a part of a safe, stable, and nurturing family!

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Founding Story: Share a story about a key experience or spark that helps the network understand why this project got started or a story about how you became inspired about the potential for this project to succeed.

A few years ago Georgia spent $500,000 providing foster care plus rehabilitative health services on a child who easily could have remained with his family. His older sister and legal guardian faced medical neglect charges because she could not balance work and care for her brother at the same time. First hospitalized over a traumatic brain injury from a suicide attempt, the teen was discharged to his sister, who in turn, was given referrals for the public and private funded supports to which she qualified. She did her best to get help, though in the end, she was unable to navigate Georgia’s healthcare system. Eighteen months later the boy was back in the hospital with infected bed sores.
Recently, a teenage girl suffered a cardiac arrest. She too suffered a debilitating traumatic brain injury. Unable to access support services, her single parent mother lost her job because of her daughter’s care requirements. Her home went into foreclosure, her car was repossessed, the family was pushed into poverty, and the teenager was back in the hospital. This mother received Childkind’s medically based parent educating and training services. The family is still intact, they have a home, support services and the mother is now working. Childkind spent approximately $4,800.

The first story illustrates why we created our Take Charge, Medically Based Parent Education & Training project; the second story illustrates the positive impact a it can have upon a family.

Which categories describe you? (the answer will not be public)

  • White (for example: German, Irish, English, Italian, Polish, French, Caucasian)

Website

http://www.childkind.org

Location: Where is your organization headquartered? [State]

  • Georgia

Location: Where is your organization headquartered? [City]

Atlanta, Georgia

Location: Where is your project primarily creating impact? [State]

  • Georgia

Location: Where is your project primarily creating impact? [City]

Metropolitan Atlanta

Problem: What problem is this project trying to address?

Parental noncompliance to a child’s complex care often leads foster care, avoidable hospitalization, and costly medical services. Underlying most cases of noncompliance is a web of unattended, but preventable social and environmental factors that all but insure family failure. No parent can succeed at providing around-the-clock care for a medically complex child and meet their family’s needs of food, housing, rest, and safety at the same time. The fractured nature and lack of public and private support services is a big factor: 46% of parents lack community supports and 61% receive no care coordination. Parents must juggle four or five medical specialists plus travel frequently to health facilities, often without a car. Also, survey data indicates many parents do not understand the information they receive from doctors (55%) due to education or language barriers.

Childkind’s Take Charge, Medically Based Parent Education and Training program helps families be successful at managing the care of their children with complex health care needs:

1.  Childkind extends care training into the home, observing a parent’s ability and providing instruction and skill reinforcement Childkind teaches the parent about the child’s diagnosis using language appropriate to their culture and literacy; providing feedback to the child’s medical team.

2. Childkind promotes and develops a strong partnership between the child’s medical team and the child’s parent.  Social, educational, economic, racial, and cultural barriers nearly always impedes affective effective transfer of information between medical providers and the caregivers.

3. By the end of their participation with Childkind’s Take Charge program, parents will be able to manage their child’s care and appointment schedule, manage services, and have the basic ability to navigate the healthcare/support system.

4.  Childkind works with the family to establish goals related to the barriers that hinder family sustainability. Childkind addresses housing issues, service access, transportation, school-based programs, income, and more.  At the heart of our program is a resource tool parent’s will use to organize medical records, eligibility documents, community-based programs, medical team contact information, and more.  The case manager and nurse teach parents to use the tool as a critical resource which, over time will help parents learn to be their own case managers.

5. Childkind helps parents learn to understand how best to nurture their child's psychological well-being when physical disabilities are significant. Childkind helps the parent through the natural grieving process and to appreciate the strengths and abilities of their child. 

Through Childkind’s work, the medical community can deliver healthcare services to children with medical complexity more effectively.  Provider staff better appreciate the inherent strengths of a low-income family managing complex regimens of care and they become more supportive of efforts to cross the cultural and linguistic divide between themselves and their patients.

Over time Childkind is developing data on common adverse social determinants that affect all children with medical complexity and their families.  Childkind shares this information with health related advocacy groups so that policy makers better understand the negative impact these determinants have.

Is your model focused on any of the following traditionally underserved communities?

  • Children who are differently abled

Does your model work within any of the following sectors?

  • Child and Family Services
  • Other

If you chose "other," please share the sector you work within here:

Pediatric Healthcare

Year Founded

1989

Project Stage

  • Established (the solution has passed the previous stages, and has demonstrated success)

Example: Walk the network through a specific example of what happens when a person or group engages with your solution.

Childkind received a referral about a boy with short-gut syndrome and other health issues. Meeting with the mother and the child’s doctors, we learned that throughout the preceding two years the boy was hospitalized frequently because of infections along CVL line or for complications related to his G-Tube. The hospital staff was ready to refer her Child Protective Services. We worked with the mother for eight months, teaching her how to manage the CVL and the G-Tube without risking infections. We joined the mother on medical appointments and worked to insure she understood all care instructions. We helped her address the barriers that kept her from being an effective caregiver. Today, she has the capacity to provide care for her child.

Impact: What was the impact of your work last year? Please also describe the projected future impact for the coming years.

Evaluations of Childkind’s Take Charge! program by an Atlanta based pediatric hospital and Georgia Department of Community Health reflect Childkind’s success at addressing the “preventable family and environmental factors” highlighted in those peer-reviewed studies. Childkind’s intervention led to a 70% reduction in hospitalization rates, a 24% reduction in patient encounters and a 49% reduction in Medicaid claims as well as reductions in DFCS involvement among the children with medical complexity the agency served.

Through focusing on family-level care competency and addressing barriers to success, Childkind’s Take Charge! medically based parenting and training program demonstrates a positive impact upon the most expensive pediatric Medicaid populations, helping to prevent avoidable “re-entries” or “re-admissions” into high cost medical and child welfare services.

Organization Type

  • nonprofit/NGO/citizen sector

Annual Budget

  • $1mil - $5mil

Financial Sustainability Plan: What is your solution’s plan to ensure financial sustainability?

There is a social investment potential for Take Charge! When state Medicaid or child welfare agencies fund the service, they save the public sector at least ten times the cost of the intervention. The program can be easily replicated and requires little administrative overhead with most expenses being variable.

Unique Value Proposition: How else is this problem being addressed? Are there other organizations working in the same field, and how does your project differ from these other approaches?

Childkind’s Take Charge! program costs $4,000 to $5,000 for each family served! The ROI benefit to Medicaid can range from 300% to 500% during the first year. For each child kept out of foster care, the child welfare agency saves $75,000 to $150,000.
 
Childkind’s MBPE can be a part of a Patient Centered Medical Home and can serve as an early intervention/family preservation program. Unique to Georgia, to the best of our knowledge it is the only model addressing adverse social determinants from case analysis of children simultaneously touched by the medical and child welfare systems.

Reflect on the Field and its Future: Stepping outside of your project, what do you see as the most important or promising shifts that can advance children’s wellbeing?

The recent studies have documented that children with medical complexity (CMC) though “a small percentage of the population,” account for “disproportionately high hospital utilization.” One study noted, “Though CMC represent ~ 1% of the population, they may account for up to one-third of child health expenditures, with up to 80% of their cost due to inpatient care.” Childkind’s Take Charge! model has proven itself successful at helping parents address their barriers and to be successful at managing the home-based care of their child with medical complexity.

Source: How did you hear about the Children’s Wellbeing Challenge? (the answer will not be public)

  • Email

Referral: If you discovered the Challenge thanks to an organization or person other than Ashoka, who was it? (the answer will not be public)

Childkind started developing its Take Charge! program in 2009. An internal analysis of foster placements among children with medical complexity served through the agency’s foster care program, revealed that noncompliance to prescriptive regimens of care frequently was the issue that led to state intervention and child removal. It was the actual experience of teenager with medical complexity in state custody that gave birth to our medically based parent education and training model.

Program Design Clarity

a) Beneficiary: Children with medical complexity and their families.
b) Activities: 1) Comprehensive family assessment, 2) The creation of unique strength-based family generated goals related to parent education and training needs and the specific barriers to success the family has encountered. 3) Weekly home visitations where the Take Charge? model is implemented, 4) Joining the parents on appointments with medical specialists, and 5) discussions with other stakeholders.
c: Frequency: weekly and PRN
d. Staff: an MSW and a licensed nurse.
e. Discharge usually occurs within 3 to 6 months

Community Leadership

We partner with 3 pediatric hospitals, 2 NICUs, and other health providers. We work with the child’s medical team, providing progress reports and insight into adverse factors affecting daily care. They help us evaluate the program’s effectiveness. Child welfare and Medicaid agencies assist with program evaluation. Emory School of Medicine provides pediatric residents for short-term internships. Childkind also partners with local nonprofits.

Age of Children Impacted

  • Pregnancy - 0
  • 0-1.5
  • 1.5 -3
  • 3 - 5
  • 6 - 12
  • 12+

Spread Strategies

The medical community can improve service delivery to children with medical complexity. Their staff will appreciate the strengths of a low-income family managing complex care and they learn to cross cultural and linguistic divides between themselves and patients. We collect data on the social determinants affecting all children and we share this information so that policy makers understand the adverse impact these determinants have.

Reflect on how your work helps children to thrive. How are you cultivating children’s sense of self, belonging, and purpose through your model?

Unaddressed social and environmental factors lead to medical neglect, foster placement, high rates of inpatient care, or worse. A family is referred to us because they may be entering or are already in this cycle. When free from this cycle, a parent is more confident and provides better care. Equally important, he or she learns to understand the child’s personality and strengths when typical communication is impeded by a physical disability.

Leadership Story

Our agency planning model focuses our efforts on the impact we have upon children and families. Our response to our customers is continuously developed around their own experience of life within their communities. We always seek ways to evaluate our short and long-term impact. Our Take Charge! program grew from an observation that medical neglect resulting in foster care placement could often be avoided. It is not one individual but the agency working together under a common vision for its customers that leads us to creative services. As CEO I strive to insure our model environment thrives.

What awards or honors has the project received? (Optional)

The Children's Freedom Initiative honored Karl Lehman and Childkind for its work insuring children with medical complexity can live in the community with their families.

Voices for Georgia's Children gave the 2016 Big Voice for Children Award because of the outcomes from our Take Charge! program.

Organization's Twitter Handle

@Childkind

Organization’s Facebook Page (URL)

https://www.facebook.com/Childkind/

Leader's LinkedIn Profile (URL)

https://www.linkedin.com/in/karl-lehman-aa38b51b

Evaluation results

9 evaluations so far

1. Relevance: Does this project seem to help children (ages 0 to 12 years) develop a strong sense of self, belonging, and purpose?

5 - Yes, this is great! The project lays out a strong, compelling case for how its model nurtures children’s wellbeing. - 44.4%

4 - It seems like a good fit, and the model talks explicitly about children’s wellbeing. - 33.3%

3 - I think so. The project seems related to children’s wellbeing, but the logic is vague. - 22.2%

2 - Not sure. The project doesn’t have much to do with wellbeing, or it doesn’t give enough information. - 0%

1 - Nope, this project definitely doesn’t fit the challenge brief (e.g., It doesn’t help kids younger than 12, isn’t in the U.S., etc.) - 0%

2. Innovation: Does this project tackle children’s wellbeing from a new angle?

5 - I loved this! The project describes a novel model that addresses important cultural or systemic barriers. - 55.6%

4 - This is pretty cool. The project is addressing an important problem in a new or compelling way. - 11.1%

3 - I feel like there’s something there, but I want more details about what makes it distinctive. - 22.2%

2 - It’s a good project, but I’ve seen others like it before. - 11.1%

1 - It was confusing or hard to tell what it made it different. - 0%

3. Social Impact: What is this project’s potential for creating positive social impact?

5 - Lots of potential. This project is achieving impressive results, and it’s growing quickly. It could absolutely inspire changes in the ways we approach caring for kids nationally, across sectors (e.g. childcare, healthcare, education). - 33.3%

4 - Pretty good potential. This project demonstrates significant positive impact so far, and it could scale regionally or nationally one day and fundamentally change how a system operates (e.g. childcare, healthcare, education). - 55.6%

3 - Budding potential. This project is creating local impact, but it would take a few adjustments before it could scale. - 11.1%

2 - Some potential. This project demonstrates some initial positive impact, but it would require major changes before it could scale. - 0%

1 - Limited potential. This project has great intentions, but it looks like it does not include key drivers of a shift towards children’s wellbeing. - 0%

4. Overall, how do you feel about this idea?

5 - This idea rocked my world. It’s awesome! - 22.2%

4 - This idea seems really exciting. With a little more polishing, it’d be among my favorites. - 44.4%

3 - I think the idea is great, but it needs some work before it moves onto the next round. - 22.2%

2 - I liked it fine but preferred others. - 11.1%

1 - It didn’t make my heart beat faster. Needs significant revisions. - 0%

5. Offer some feedback. Where should this participant spend some time revising?

DEFINING THE PROBLEM. Make sure to articulate the root causes or main barriers of the social issue your project addresses. (Founding Story, Problem, Solution). - 25%

CLARITY OF MODEL. Make sure to mention (a.) the beneficiary, b) the main activities, and c) how those activities drive social impact. Keep it streamlined! - 75%

MARKETPLACE. Make sure to research other players in this space and articulate how this project is different. I didn’t get a complete sense of how this project compares to others. - 50%

IMPACT POTENTIAL. Make sure to use specific numbers to describe what your project has achieved so far! And consider how you might scale the model or its insights, through partnerships, trainings, or franchising. - 0%

WRITING STYLE. Try to stay concise and make it vivid. Avoid jargon. - 100%

Nothing stands out! I thought it was great. - 75%

4 comments

Join the conversation:

Comment
Photo of Brittany
Team

Hi Karl Lehman  - I enjoyed reading your submission and learning about your organization. As a mom to an ex-24 weeker I can certainly relate to care for a kiddo with complex care needs. Through our organization Will's Way we provide support grants to families in medical crisis and advance research on family integrated care. One of our research projects is an app (we3health) to provide education, encourage and engagement by parents in the NICU and have many requests to extend to the transition home (and beyond!). Is your curriculm digitized? Happy to chat live if you'd like. My email is brittany@willswayfoundation.us.

Photo of Karl Lehman
Team

Brittany, thank you for your comments.

We do not have a set "curriculum."  Instead, we have set components.  A multi-disciplinary team including a licensed nurse and MSW/LMSW/LCSW partner with the family to design a unique curriculum that ties all of the requisite components together.  The individualized curriculum is documented in practical family centered tool we call the "Independence Book."

The heart of the program is the development of the family's ability to manage the child's complex care requirements, successfully.  We become an extension of the hospital or pediatric specialist, working in the home, guiding parents towards care compliance and family sustainability.  Common adverse factors include low income, social isolation, parental exhaustion and poor mental health, lack of support services in the home, poorly performing IEPs and other school-based services, lack of care skills, lack of medical equipment/supply resources, poor housing environments, to name a few.

The impact of a medically complex child on a family can be severe.  Among the Medicaid eligible children we served, 98% had incomes under 100% of the Federal Poverty Rate (47% had incomes under 50%). 

I would enjoy talking with you soon.

All the best

Karl

Photo of Brittany
Team

Understood.  let's chat soon. I will send you a note! 

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