Health care of people with Spina Bifida and Hydrocephalus (SBH) in Lithuania

Introduction Ruta Udraite-Mikalauskiene Mother of 6 year old daughter with SBH One of Lithuanian SBH association founders 3 years was a board director, now - board member.

About Lithuanian Spina Bifida and Hydrocephalus (SBH) association We don’t have official data about the number of people living with SBH in Lithuania, but it might be around 400 with SBH and 700 just with hydrocephalus From 2015 November became a member of Lithuanian disability forum (LNF) Established in February 2013 Now has 24 members and around 80 active SBH community members 3 board members From 2013 June association became a member of International Spina Bifida and Hydrocephalus federation (IF) From 2013 October association cooperates with Vilnius children hospital rare diseases center

UN CRPD ratified in Lithuania on May 27th 2010. By signing the CRPD, the EU Member States (MS) commit to “provide those health services needed by persons with disabilities specifically because of their disabilities’ and they should be provided as close as possible to people’s own communities, including in rural areas”. -> Multidisciplinary care is needed by persons with SBH because of their complex disability, but it’s not available in Lithuania and all responsibility lies on parents shoulders. Assistive devices and continence aids (catheters) - part of the services needed as a result of having SBH. MS should invest into multidisciplinary care and make sure that assistive and mobility devices are available to people with SBH

Some examples of health care procedures Act Process Compensation mechanism Visit to doctor-specialist Looking for information about the best doctor-specialist for SBH in that field Visit to family-doctor to get sending to doctor-specialist Waiting in a line for around one month for visit Visiting doctor-specialist and getting treatment All is paid by government Assistive devices – wheelchair Filling up lot of forms and papers Waiting for 15 d. to get answer and permission to by wheelchair Choosing wheelchair, but just from companies in Lithuania, impossible to by from other country Every 4 year for child – amount 869 eur Every 5 year for adult – 1216 eur Rehabilitation Very complicated procedure – no possibility to get consistent all year/life rehabilitation We have 3 types of rehabilation – I, II, III I and II you can get in local clinic. III – only in special rehabilitation hospital. Only rehabilitation (doctor-specialist) can decide and send to any type of rehabilitation IF government has money (in beginning of the year). Children can get from 5 to 46 days/year Adults – 5 to 23 days/year

Catheterization It’s very important for people with SBH to start catheterization early on, because it’s the only one effective way to save urinary system and kidneys. Children with disabilities are still denied assistance for catheterization at kindergartens and schools. Seeing catheterization as a medical (not hygienic) procedure, the authorities refuse to train its personnel to support catheterization in educational establishments, leaving this task up to the pupils’ parents. -> many young children in need of regular catheterization, whose parents are unable to provide such assistance in kindergartens during daytime, are left out of the legally non-compulsory early years education. -> Families of children of school age are often forced to quit or reduce their paid employment to accompany their children to school.

Catheters – small, but very important victory after long battle Since the founding of our association, we fight for increasing financial compensation of catheters. For a long time only 5 units per month were compensated. Long lasting active national and international advocacy (we wrote to UN before Lithuania CRPD implementation review) efforts generate results – from October 2016 we are getting compensated 150 units per month. We are very happy about this - now no need to reuse single use catheters -> better for our children and adults health. Also, we save around 60 eur/month.

Thank you for attention