National Deafblind Census

This is the first nationwide effort to collect data about the people with both vision and hearing impairments to identify their needs, define personal support trajectories and provide targeted aid.

Support
Social security, supporting people in difficult situations

Beneficiaries
People with both vision and hearing impairments

Project working language: Russian

Time frame: since 2014 till now

Status: active 

Updated: 02.12.2019

Contact details
Olga Kudryavtseva, program manager, Regional Development
charity@so-edinenie.org  
+7 495 212-92-09

Project web-site
http://slepogluhie.ru/

Social media

Video

«So-edinenie» Deafblind Support Foundation

Target audience and stakeholders of the project

Target audience (beneficiaries):

Primary:

  • People with combined vision and hearing impairments, including those who are totally deaf and blind as well as those who have some residual sight and/or hearing

Secondary:

  • Their families and friends

Stakeholders:

  • Census takers, including volunteers, libraries and NGOs
  • Local associations supporting deaf-blind people and people with vision and hearing impairments
  • Healthcare and social institutions, social services providing information about deaf-blind people

Mission and goals 

Mission: Create a nationwide database of deaf-blind people and identify their needs to develop a system for providing targeted aid and support

Goals:

  • Gather data about deaf-blind people
  • Maintain and update the national database of the deaf-blind people

Coverage

Russia

Achieved results

Immediate results

As of June 30, 2019, 4,161 deaf-blind people have been entered into the database, with a personal development trajectory defined for each of them. As of July 2019, assistance services operating in five Russian provinces (Moscow, Moscow Oblast, Chelyabinsk Oblast, Udmurt Republic and Perm Krai) have provided 96 hours of escorting per year for totally deaf-blind people and 72 hours for those who have some residual sight and/or hearing. Government institutions have provided 240 and 84 hours of tactile interpreting respectively. Some deaf-blind people live in asylums and in training apartments. A number of deaf-blind people are employed at two ceramic studios, one in Moscow and one in Novosibirsk. There is a special magazine for deaf-blind people, yet it needs a solid business model and stable funding. We have achieved good results in providing targeted aid, training and escorting. Based on the census data, our foundation has provided clothing and footwear worth over 4 million rubles to those in need.

In 2019, our foundation has been carrying out six projects requested by the census respondents, including remote computer support, legal aid, PR training, Leadership School, Your Companion magazine and a dating service.

Feedback from beneficiaries:

“SoYedinenie and its projects really changed my life and my kid’s life. My kid now has the opportunity to see best health professionals and receive in-home care, as well as to go to different places on vacation. My son’s communication, listening and motor skills are improving, resulting in a higher quality of life. I personally began to feel more confident about myself and our future, I met so many interesting people, some of them even became my true friends and mentors. I now have the opportunity to take up various on-site and off-site training courses, to have a better understanding of legal issues and to help other deaf-blind kids.”

Yelizaveta Zimina, mother of a deaf-blind child, Orenburg (After the census, Yelizaveta became an activist, went through training, started taking her son to rehabilitation sessions and was elected head of the regional association of parents with deaf-blind children.)

“I joined the project in November 2014, while attending a workshop for deaf-blind people in Puchkovo. The five years I spent with the Foundation were perhaps the brightest years in my professional and personal life. I was appointed coordinator in one of the first entertainment centers for the deaf-blind in Izhevsk. Working at the center, I could create, meet new people and get them involved in my activities. I enjoyed all that. “I participated in the Foundation’s literary contests and the ‘Russia through the eyes of the deaf-blind’ project, and this was really important to me. Through the Foundation’s events – Culture Weeks, seminars – I got a lot of new friends around the country, both deaf-blind and able to see and hear. I like to travel yet I never had a chance to go anywhere before. In my last five years I traveled much more than in my entire life before that. There were all sorts of trips: to share my experience, to learn something new, to have a vacation. I’ve been to Yekaterinburg, Perm, Moscow, Makhachkala (and other cities in Dagestan), Radeberg (Germany). I am really grateful to the Foundation for this opportunity to see the world with my own eyes, get close and feel it.”

Lyubov Malofeyeva (Izhevsk)

“After the census, I was invited to Moscow to go to a doctor there who helped me find the hearing aid that would work best for me. The SoYedinenie Foundation provided me with a Braille Mini U2 notetaker, which I still use today and for which I am very grateful to the Foundation. I have so much fun these days: tours, master classes, picnics, cultural and sports events. Also, I participate in artistic contests. In September 2018, the Foundation arranged an unforgettable meeting with the pop star Lolita. And on top of that, I got to go to Saint Petersburg to attend the 2nd Women’s Forum and get an award in the Overcoming the Adversity category. I feel more confident now, I enjoy life. I know that people need me, and I can help them, I can be useful.”

Natalya Zalevskaya (Chelyabinsk)

“Two years ago, after the census, I joined a support group. I went to a rehabilitation session in Puchkovo where I learned about things other deaf-blind people do. I realized I can do more with my life: I can create for myself, for my family, for people around me. I met some friends. I went to a resort area near Tyumen, where I attended a computer class. I learned how to use Jaws (software for blind people). I went through orientation training and passed an exam for computer users. In my hometown, I go to a chess and checkers club. I played in a number of checkers tournaments for people with various disabilities. My life has a goal and meaning now. For the past couple of years, I have been a member of the Expert Council, I work with the Your Companion magazine, I go to the club, I took part in two general meetings [of the regional deaf-blind association]where I was actively involved: I voted, asked questions, met new people, communicated with others. Because of the Foundation, my life turned around: I started communicating with people, going outside (I can go to the association on my own; sometimes, I go to the library or just go outside for a walk). Because of the Foundation and the Expert Council, I went through an individual rehabilitation/inclusion program and got new rehabilitation tools I need for comfortable life. My life changed dramatically, and this progress means the world to me. I am now an active member of the deaf-blind community, and I will support any effort to make the lives of deaf-blind people better.”

Aleksandr Chupyshev (Chelyabinsk)