Everyone, regardless of diagnosis, should strive to create an inclusive environment for individuals with special needs, according to Ravana Sagadieva of the Union of Parents of Special Children.
Chat with Rauana Sagadiev - Union of Parents of Children with Special Needs
Rauana, straight-up, let's dive into your incredible journey! From a practicing psychologist and art therapist to leading an NGO, you've come a long way. Your son's diagnosis shifted things, didn't it? Turning adversity into a mission.
- Hey there! Thanks for having me. You're right, my family's journey took a drastic turn when our son Alihan was diagnosed with health issues. It was a tumultuous time, but it sparked a new fire within me. I felt this overwhelming drive to bring change and make things better for children like him.*
You formed the Union of Parents of Children with Special Needs - quite a feat, uniting parents from all over Kazakhstan. How'd you do it?
- Well, it all started with my personal experience. My husband Askar and I have a son with special needs, and we faced numerous challenges. We wanted to ensure our son, as well as other children like him, would grow up feeling included and unafraid in society. Initially, I suggested we reach out to other families, and from there, the union was born.*
Before starting the union, what did you know about the NGO landscape in Kazakhstan? And what were some challenges you faced?
- I had some understanding of the NGO scene but was shocked to learn that out of 30,000 NGOs in Kazakhstan, only about 1,500 were working directly with individuals with disabilities. Artificial segregation was prevalent—different diagnoses all working in their separate associations or communities. Identical core issues—equal rights and equal access to quality services—were overlooked. My challenge was to unite parents battling similar battles and create a sense of community.*
Tell us about the problems parents approach you with, and how you maintain contact with them.
- Parents commonly reach out when they receive their child's diagnosis. They're initially bewildered, unsure of what to do or where to turn. Our aim is to help them navigate this difficult time, raise their awareness, and show them that they're not alone. Today, we have WhatsApp groups across Kazakhstan, where we gather statistical data, identify real needs, and propose solutions to improve the quality of life for families raising children with special needs.*
Your union is a parent-led organization, working on a voluntary basis. What projects do you focus on to create an inclusive environment?
- We believe in developing social entrepreneurship. Our idea is to educate, retrain, and employ parents to become professionals in various fields like speech therapy, psychology, and education. Increasing allowances won't solve family problems; we need independence. Last year, our proposal to allocate subsidies and grants for parents to pursue higher education in these specialties was well-received and is being developed for future implementation.*
Not just limited to children, the union reaches out to siblings as well, right?
- Yes, our union aims to include everyone. In some cases, children with special needs may deprive other siblings of attention and financial resources. We aim to support healthy siblings to receive a quality education and secure their future. We submit requests to relevant authorities regularly, striving for positive changes.*
According to the enrichment data, Kazakhstan is making strides towards inclusive education through a new law and support from foundations. How does your union fit into this broader picture?
- Our union's role is to advocate for policy changes, provide support to families, and work towards creating a more inclusive environment for children with special needs. Initiatives like ours ensure that voices from real families are heard, leading to meaningful change in laws and policies surrounding inclusive education and support.*
Any key achievements or projects you're particularly proud of?
- One of our proudest projects is our "charity campaign" during the holidays. Children with special needs submitted wish lists, and generous sponsors fulfilled their requests. It was a heartwarming experience for everyone involved.*
Lastly, you've had some political experience - running for a deputy position. What made you decide to enter politics?
- I felt that with no representatives of children with disabilities in any government agency, change needed to happen. The current crop of politicians may raise important issues, but they're different from our daily challenges. I wanted to be a voice for our children, advocate for early diagnosis, timely intervention, and accessibility of centers, create public awareness, and improve the quality of life for families raising children with special needs.*
Despite some setbacks, do you see any changes in the mindset of parents, or self-perception of parents?
- Individually, parents are slowly coming to terms with their situation and finding their strength. However, on a collective scale, too much change hasn't occurred. I liken it to a drop of water in a glass—there won't be waves, but you'll notice the movement. Gradually, my hope is that parents will become more self-confident, stand up against bullying, and teach others to accept and embrace their children with special needs.*
- Rauana's passion for science and health-and-wellness led her to pursue a career as a psychologist and art therapist, but it was her family's health challenges that propelled her into advocacy work for family health and mental health.*
- When Rauana formed the Union of Parents of Children with Special Needs, she tapped into her learning in education-and-self-development and personal-growth to create an organization that encouraged lifelong learning and goal-setting.*
- Her union is not just a platform for parenting support but also aims to help siblings pursue their education, ensuring a holistic approach to family health.*
- As a result of her efforts and those of her union members, Kazakhstan's inclusive education policies are evolving, aligning with Rauana's vision of creating a society that values and supports all children, including those with special needs.*
- Rauana's experiences in parenting, advocacy, and politics have taught her the importance of adapting, persevering and never losing sight of her goals—lessons that foster personal growth and equip her for future challenges.
