SPECIAL HOPE NETWORK

Creating a world for kids with intellectual disabilities

Bellevue, WA   |  http://www.specialhopenetwork.org

Mission

Special Hope Network is a faith-based Christian organization, called to bear witness to God's glory through caring for children with intellectual disabilities in Zambia; regardless of their race, religion, social status or gender, by equipping families and caregivers to provide a loving home, holistic health, and exceptional education and therapies.

Ruling year info

2009

President

Rev. Eric Nelson

Vice President

Mrs. Holly H. Nelson

Main address

PO Box 50543

Bellevue, WA 98015 USA

Show more contact info

EIN

26-3933134

NTEE code info

Developmentally Disabled Services/Centers (P82)

Specialized Education Institutions/Schools for Visually or Hearing Impaired, Learning Disabled (B28)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We aim to address the stark lack of education and related services to children with intellectual disabilities in Zambia. There are very few classrooms for children with autism, Down syndrome, cerebral palsy, microcephaly, hydrocephaly, and other genetic issues that result in intellectual disability. There are many competing problems here that government must pick and choose funding among; poverty, HIV, infant mortality, malaria, that children with special needs aren't the top priority. Many parents hide their child, often locking them inside their small home before leaving to work for the day, returning hours later (to a very hungry, wet, lonely child). This isolation is most often due to the idea that the child is cursed, and therefore anyone that touches the child with intellectual disability or interacts with the family will 'catch' the disability. This is a big problem, and one that will take many, many years to solve, but one we are making headway in every day.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Community Care Centers

Celebrating Differences
Our Community Care Centers (CCCs) are at the heart of what we do. We believe that children with intellectual disabilities have an important role in their families and in their communities. Because of this, we open centers in the community where Special Hope staff can partner with parents to provide them with the guidance, training, and support necessary to see their children with disabilities thrive.

What is a Community Care Center?
Community Care Center (CCC) services include medical guidance, family counseling, motor training, communication support, feeding instructions, and educational lessons. Each center provides a space for 50-125 children and families. Our CCCs operate as parent training centers, and are “one-stop-shops” for everything a child needs, and all the resources and training that a parent or caregiver requires. Our CCCs consider every aspect of the child’s health and well-being so that each caregiver can be trained based on the specific needs of their child. The centers are located within each compound so that the community can feel the impact of a safe, inclusive space for children with disabilities.

Why Open Community Care Centers?
In Zambia, accessibility to care for children with intellectual disabilities is very low, and in Lusaka, facilities and programs offering necessary therapies and education are few and far between. Kids who have disabilities are often left incredibly marginalized and vulnerable, and without a community of support, families are unsure how to care for their child. As families continue to commit to the holistic care of their child with disabilities, our Zambian community is reminded that all children are created with great purpose, a need for love and belonging, and with the ability to positively impact their communities!

History
In 2012, Special Hope Network set up its first two Community Care Centers in the Ngombe and Garden compounds in order to address the lack of resources and support available for children with disabilities, and their families. In 2018, two more Community Care Centers were founded in new, densely populated compounds; Mtendere and Kaunda Square. The fifth CCC, Chawama, was opened in 2019. Focusing on the core principles of educational excellence and the intrinsic value of each child’s life, we are working to see these children

Population(s) Served
People with intellectual disabilities
Economically disadvantaged people

The Resource Center is a top-notch educational program which is a socially-conscious model where SHN brings in tuition from middle-class Zambian students to support the Community Care Center programs. This Resource Center is the site for all our staff trainings. We do all assessments on-site, write an Individualized Educational Plan for each child, and then carry out that plan each day. Each child's IEP has weekly data reported on the specific goals for each child, and quarterly the parents receive a progress report on their child's individual growth in each area of development. This program serves children birth to age 20 with moderate to profound intellectual disabilities.

Population(s) Served
People with intellectual disabilities
Children and youth

Educational Staff + Caregivers
Special Hope Network relies on Zambian nationals to staff its various programs; therefore we have a significant focus on training teachers, parents, caretakers and specialists. We regularly host internal teacher trainings based on the needs of our staff, and we host parent/caregiver workshops to provide at-home learning and behavior strategies for students. Our staff also trains local government school teachers that are looking for insight on how to care for students with intellectual and developmental disabilities. Special Hope has provided sign language courses to organizations working with families of children who have intellectual disabilities.

Community Leaders
Special Hope Network team members speak on behalf of kids with disabilities at medical conferences, local businesses, clinics, and at churches. SHN staff coordinates conferences to empower faith leaders to become advocates for people with disabilities in their communities and congregations. Staff also host community seminars on specific topics like Autism Spectrum Disorders, and provide ongoing training to interested community leaders. Training will always be an important and unique aspect of SHN.

Population(s) Served
Caregivers
Families

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Individualized Education Programs (IEPs) developed

This metric is no longer tracked.
Totals By Year
Population(s) Served

Age groups, Ethnic and racial groups, Health, Family relationships, Social and economic status

Related Program

Community Care Centers

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

At our CCCs, we are phasing out IEPs in favor of developmental checklists, and parents knowing exactly where their child is in the different developmental areas.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our goals are to increase services, including education regarding causes and treatments for disabilities, parent training, navigating access to good medical care, and a community for families who have a child with an intellectual disability. We track children's weights based on the World Health Organization's charts, and work to increase nutrition and health of each of the children we serve. We want Zambian society to develop from one that has few services that are difficult to find, and isolates families who have a child with special needs to one that is inclusive, welcoming, and even, dare we hope, loving toward people who have an intellectual disability. Our Community Outreach trainings are teaching school staff, clinic health staff, and church members and staff all about disabilities. What causes and doesn't cause them, what we can and cannot do about each child's disability, and what methods we can use to include children into each type of community site. We would love to see all churches welcome children who have intellectual disabilities and their families. We would love to have clinics be a safe place for children who have disabilities and their families who have questions. We have a big goal, and are working toward that diligently every day.

Our Community Care Centers are safe places for mothers and caregivers to come with their child to learn academic, communication, motor and adaptive skills alongside other moms. Each caregiver learns good nutrition, how and why to give safe water, positions for feeding, textures of food, and other lifelong knowledge specific to their child's disability. They learn all they need to advocate for their child for life in society, for medical care, and for inclusion. Each Community Care Center has 65 mom/child teams at a time, in a course that takes two years to learn these skills. As one mom finishes her two year program another new mom is added to the program. These CCCs are close to where the families live, and the friends they make during their tenure at our Centers create more stable homes for each mom as they learn together. They now have others in similar situations to themselves, and can be a support to another.

Our Community Outreach Program extends the safe place for our caregivers and their children with intellectual disabilities into the community organizations they'd use most often. Churches, schools and health clinics are the most often visited community sites by our families. We aim to train as many as possible in each of the compounds where our CCCs are located. When a site has more than half its staff trained by our CO team, they are given a poster to place outside their site that says "Disability Friendly Site", welcoming people and especially children with intellectual disabilities right from the front door.

We provide parent training at our Community Care Centers in very poor compounds, where we teach parents in a setting where they are the norm, instead of someone to be stared at, and the odd one who doesn't fit. Each parent has a child with an intellectual disability, and lives in the same compound. We teach parents by modeling everything we do, so that no matter which of the local languages the parent-child team speak, they are able to understand exactly what skills we are teaching them. Parents then teach and model activities to other parents, so there is a groundswell of acceptance and community sharing amongst the moms and caregivers.

Parents who attend and actively participate at our CCCs receive an incentive pack monthly, which increases the financial stability of their family. In the past, our incentive for parents was a pack of a variety of necessary foods, but now the 'incentive pack' is money that can be used for rent or food or medicines. If families opt to get it every six months they get a bit more than the monthly amount, and learn not to depend on our incentive for daily needs. If families opt to get it once a year, the amount is a bit more than the 6 month amount. We are hoping to encourage parents to save to start a small business to be able to support themselves. 325 parent/child teams are currently attending and actively participating in one of 5 Community Care Centers.

We are working to have donors all around the world supporting this endeavor, since we have no support from the government here in the form of money. We have Zambian business and individual donors, and many churches and individuals in the USA.

Our Community Care Centers and Community Outreach are very scalable and replicable. We have refined them over the past 12 years so that as sustainable funding comes in, we can start a new CCC in a new, untrained area, and then begin a Community Outreach Team in that area as well. We can serve 65 more families in each new area.

We have been in Zambia since May of 2010, working on the ground, learning the culture and norms, and learning how to best serve families who have a child with special needs. When Special Hope Network began we had one Pastor and one Special Education Teacher. Almost 12 years later, we now have proven methods that are working well: parents are growing, kids are learning, and we are well-connected with medical service options, and doctors and pharmacists who know the unique medical needs of children with special needs. We have 48 staff who are learning and growing and are rising to new levels of challenge as we add one-two Community Care Centers per year (our lofty goal!). Our support staff (cleaners, driver, gardener) is well-practiced at supporting all our educational programming. We are all committed to one vision- serving children with intellectual disabilities the best we can.

Since 2010, we have had steady and slow progress. We founded 5 Community Care Centers, serving 325 children and their primary caregiver weekly. We have trained hundreds of others who work at other local NGOs, ministries, and government offices regarding special needs and what can and cannot be done to improve their situation (educationally, medically, nutritionally, and even the positions they sit/stand in, and textures of food they eat). Two CCCs began in 2012, two began in 2018, and one began in 2019. Our next Center is targeted to begin in June 2022. Slow and steady progress has meant we have been able to tweak and change our model to make it simple to run by our Zambian staff, and easily scalable for adding more Centers, extending our reach into untrained communities.

Our Community Outreach began in January of 2021, and has trained at 13 churches and 8 schools, as well as 3 health clinics. Each school trained for three weeks in a row to learn our Disability Advocacy Training. The church groups are learning for 8-week training sessions. Health clinics are also learning in 8 week trainings. Two of the schools we trained fully are now enrolling learners who have intellectual disabilities. Our church advocates have been training their Sunday school teachers the methods they learned about how to add children with disabilities into their classes. People from the clinics are encouraging parents to visit our Community Care Centers, after identifying the child with a disability and encouraging them to attend our CCC. Our disability advocates are graduates of our Disability Advocacy Training program. They are now identifying children who have intellectual disabilities in their compound, and asking us to begin a new CCC near those children. Advocacy has really been on an upward swing this year.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Children with intellectual disabilities in Zambia as well as their caregivers and families.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Community meetings/Town halls, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Special Hope Network staff collected feedback from parents of children who regularly attend the Resource Center to analyze how satisfied they were with the programming, services, time commitment, and fees. The results of this survey allowed the leadership team to make changes to the programming to better meet the needs of the families being served.

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    We are better able to serve the children and families in our programs by listening to their needs and concerns and adjusting our programs accordingly.

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to get feedback from marginalized or under-represented people, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection, It is difficult to get honest feedback from the people we serve,

Financials

SPECIAL HOPE NETWORK
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

SPECIAL HOPE NETWORK

Board of directors
as of 11/4/2021
SOURCE: Self-reported by organization
Board co-chair

Mr. Ben Menenberg

World Vision, Inc.

Term: 2015 - 2022


Board co-chair

Rev. Eric Nelson

Rebecca Scharf

University of Virginia Hospital

Min Kim

Brandon Harkless

Emma Mwanza

Rebecca Fry

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 8/4/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

The organization's co-leader identifies as:

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 08/04/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.