Our Values and Principles
Health care, education, and community inclusion for all people with complex medical needs and disabilities are human rights. Inclusion is at the heart of all we do. Integrity is the foundation of our work. Representation is the key to our work. Connection is the advancement of our work. There is both a medical model and a social model of disability. We must stand united against the things that divide us. We will have a real and lasting impact.
Inclusion is at the heart of all we do.
We advocate for and with all children with complex medical needs and disabilities, inclusive of ALL: races, faiths, socio-economic backgrounds, genders, sexual preferences, immigration statuses, political parties, and forms of disability (physical, cognitive, intellectual, sensory, mental health, behavioral, chronic illness, genetic differences, and more).
Our advocacy is centered on our children with complex medical needs and disabilities, and our primary responsibility is to empower them to advocate for themselves and others.
We seek to engage and empower the entire family and network of children with complex medical needs and disabilities — including siblings, parents, extended family, other caregivers, providers, educators, friends and supporters — in order to educate, expand our reach, and create lasting societal change.
Integrity is the foundation of our work.
We respect all differences and value the contributions of all people.
We respect our children’s dignity, individuality, and unique personhood. We do not share things about our children they do not wish to have shared. If they are unable to express their wishes, we treat them as we ourselves would wish to be treated.
We honor individual requests when it comes to their own identity regarding race, gender, culture, and disability.
As we learn and grow in advocacy together, we seek strength and understanding from a place of goodwill and we share that grace with all those we work with to advance the goal of mutual empowerment.
Representation is the key to our work.
By sharing our stories, we put a face on the issues impacting our children. We humanize laws and policies. We embody real-life benefits and consequences for those disenfranchised from the process of policymaking.
We destigmatize and normalize disability through visibility.
We destigmatize and normalize accommodations for disability through visibility.
We encourage a sense of pride and culture of belonging as a part of the disability community.
We support and empower one another.
Connection is the advancement of our work.
We listen to adult advocates with disabilities and complex medical needs; we seek their guidance, respect their opinions, and look to them as role models for our children.
We partner with like-minded groups in the advocacy and health care space to collaboratively advance our mission.
Disability knows no demographic boundaries, thus we join other marginalized groups in advocating for a more equitable future. By pursuing intersectional justice, we are stronger together.
We work to engage those who disagree with us. Our children’s health care and civil rights should be non-partisan issues; however, we recognize this is not always the political reality. Therefore, we seek to connect with those in opposition, find common ground wherever possible, and work together towards a future where the health care, education, and civil rights of people with complex medical needs and disabilities are both secured and advanced.
We know health care, education, and civil rights for people with disabilities and complex medical needs can only advance with broad societal support. Therefore, we seek to educate and engage all those who know and care about our children and our families.
There is both a medical model and a social model of disability.
The medical model:
We recognize certain medical conditions can be difficult for an entire family - physically, emotionally, and financially. The lived experience of people encountering such challenges is relevant and valid.
Finding treatments and cures for certain life-threatening medical conditions, diseases, and illnesses is important to extend and improve the quality of life.
The social model:
We recognize that some disabilities are not medical conditions and do not need to be treated or cured. In some cases, these disabilities are intrinsic to a person’s identity.
We believe neurodiversity should be accepted.
We understand that it is often not the disability, but societal stigma and systemic lack of accessibility and resources, which limit an individual’s ability to live the full and meaningful lives we each aspire to.
We celebrate the vibrant and diverse disability community, and we are proud of the many accomplishments to advance individual and civil rights.
We’re stronger when we unite against the things that weaken and divide us
We stand against ableism. There is no acceptable form of discrimination against people with disabilities.
We do not endorse our culture’s martyrdom of parents/caregivers of children with complex medical needs and disabilities.
We do not endorse our culture’s imbalanced celebration of non-disabled individuals showing common courtesy toward people with disabilities.
Our children are not a tragic story or an inspirational tale told for another’s benefit. They are children like all others and deserve to be treated with dignity.
We reject the scarcity mentality. Securing adequate resources and just civil rights for one marginalized group does not disadvantage any other group.
We respect each individual’s unique path and do not make assumptions which characterize, rank, or compare experiences.
Our families deserve a seat at the leadership table when shaping policy and discussing issues related to our children with complex medical needs and disabilities.
We strive for lasting, meaningful, and sustainable change.
We believe “all means all” and agree with the disability community’s mantra “nothing about us without us.” People with disabilities are diverse in every way, and people with disabilities themselves must lead the movement for positive change in public policies and private perceptions.