APDSF Executive Committee Meeting

8th Sept.2017 The Taj Mahal Hotel

New Delhi

( Rtd.Br. Gen.)Dr Lalita Joshi

President DSAN

Vice President APDSF

Introduction

Nepal is landlocked country between north in China and India in south, west and east.

Population 29,033,914 (July 2016 est.) Kathmandu 1.183 million

2015 est.

2/3 of the country is covered by hills and mountains More than

84% of population live in rural area.

Literacy rate: 53.7% (male:65, female: 43)

Birth rate 19.9 / 1,000 population 2016

Mother’s mean age at birth 1st child 20.1 years in 25-29 years group

Dialects 123

Religion Hindu 81% Buddhist 9%

Mt. Everest 8848 meters World’s most unique Living Goddess KUMARI

Situation of Disability in Nepal

Different types of disabilities:

o Physical disability: 36.3 percent of the

disabled population

o Blindness/Low vision: 18.5 percent

o Deaf/Hard of hearing: 15.4 percent

o Speech problem: 11.5 percent

o Multiple disabilities: 7.5 percent

o Mental disability: 6 percent

o Intellectual disability: 2.9 percent

o Deaf-Blind: 1.8%

Earthquakes 2015, the number of disabled persons in Nepal has increased.

Thousands of “temporarily or permanently disabled through crush or other injuries.”

Worldwide 20,000 ID

Disability situation

National Census held in 2011 :- 7-10 % of total population disabled

Still disability taken as penance to past sins and object of pity.

68.2% PWDs are illiterate compared to without disability

No comprehensive data on Developmental disabilities

Skill training negligible for DD

Research showed 69.3% depend on family support .

PWDs posed problems in 90.5 % of the households

Health, accessibility, education, economy, and employment opportunities for Developmental disabilities in particular almost nil

Never got any treatment of disabilities or co-morbid conditions (as in DS) though curable due to lack of knowledge , poverty , poor health facilities

DD face Discrimination / restriction from achieving their fundamental rights by Government, family and society

Human ambulance

Human ambulance

Need of Data on disability

Assist policymakers to make decisions about the type of preventive programs appropriate for the country.

Increase access to services by removing physical and social barriers

Thematic disability curriculum adaptations for ease /success in education

Skill training for livelihood opportunities

Encourage governments to construct better facilities or provide tax incentives to schools or firms that accept persons with disabilities

Global Scenario

The increasing risk of chromosomal abnormalities , particularly Down syndrome, with advancing maternal age . Middle- and low income countries have a high birth prevalence of Down syndrome for a number of reasons, including a high frequency of older women becoming pregnant, limited access to family planning, and absent prenatal screening, diagnosis and associated services. Birth prevalence may be as high as2-3 per 1,000 live births in middle- and low-income countries and as low as 1.2 per 1,000 live births in high-income countries (Modell et al., 1992; WHO, 1996). An estimated 217,300 infants with Down syndrome are born each year. Early infant or childhood death from congenital heart disease and infection is common among infants and children with Down syndrome in middle- and low-income countries. In South America, 55 percent of infants with Down syndrome die prior to their first birthday, approximately 60 percent of them having congenital heart defects (Castilla et al., 1998).

Bangla Desh Total population (‘000) 148 692 Estimated annual births (‘000) 3 038 5442 annual births with Down syndrome, March of Dimes 2006 Bhutan The March of Dimes Report on Birth Defects estimated that 876 children were born with birth defects annually in Bhutan (Christianson, Howson and Modell, 2006). 32 with Down syndrome India Total population (‘000) 1 224 614 Estimated annual births (‘000) 27 165 Down syndrome frequency of 1 in 916 (82 cases of Down syndrome in 75 103 births) (Verma et al., 1998). In the more recent three-centre study that specifically investigated Down syndrome, 1 per 1150 births was affected. Indonesia Total population (‘000) 239 871 Estimated annual births (‘000) 4 372 The Down Syndrome Association of Indonesia estimates that there are almost 300 000 cases in the country Down syndrome, 0.12%; (MoH Republic of Indonesia, 2010). Sri Lanka Total population (‘000) 20 860 Estimated annual births (‘000) 378 The March of Dimes Report on Birth Defects estimated that 22 641 children were born with birth defects annually in Sri Lanka(Christianson, Howson and Modell, 2006). 692 with Down syndrome

Regional scenario

Country scenario - NEPAL Total population (‘000) 29 959 Estimated annual births (‘000) 72

Sources: 1. United Nations Children’s Fund. State of the world’s children 2012: children in an urban world. New York:

UNICEF, 2012

2. The UN Inter-agency Group for Child Mortality Estimation (IGME). Levels & Trends in Child Mortality: Report 2012. 2012

3. Ministry of Health and Population (MOHP) Nepal, New ERA, and ICF International Inc. Nepal Demographic and Health

Survey2011. Kathmandu, Nepal: Ministry of Health and Population, New ERA, and ICF International, Calverton, Maryland,

2012.

Why have DS not received the attention they deserve to date from policy-makers, funding organizations and health-care providers? 1 This is probably due to the misperception that these disorders are rare. 2 Another myth is that DS require expensive and high technology interventions for their care and prevention that are beyond the health budgets of low- and middle-income countries (LMIC). On the contrary, it has become apparent that simple technologies and strategies are at hand for prevention

The March of Dimes Report on Birth Defects estimated that 43 727 children were born with birth defects annually in Nepal (Christianson, Howson and Modell, 2006). They comprise of 1533h with Down syndrome. 2016 WHO reports show Down syndrome being 3rd in the Birth defects list in Southeast Asia region including Nepal.

Challenges

a. Surveillance program

No database of DS deliveries ( Hospitals/home).

b. Genetic services

No Dept. of Medical genetics, Genetic counsellors

C. Prevention program

No preconception genetic counselling in high risk group for DS

d. Services for DS

Health needs / Early interventions

Quality education/ employment Key obstacles unwillingness to creating a more accessible environment at schools or workstations Transition from adolescence to adulthood – programs for self sufficiency

Old age issues (physical, psychosocial welling being) now lifespan increased

nearly to 70 years

Opportunities

Education - DOE is doing curriculum development , adaptations on need based assessments / teachers training program on specific disability types along with general disabilities

Health - free heart operation for children below 15 yrs for all depending on budget allocations from Govt.

Genetic lab started in Bir Hospital

BD Surveillance, Prevention & Control being formulated by FHD

Record of birth defects HMIS started

Ten hospitals identified for initiating birth defects surveillance, needs consensus and commitments

Early detection/referral training started (2 districts Jajarkot –FCHV ,MO, Stakeholders Rukum - Health facility incharge ,MO )

10 years disability action plan /policy for prevention, treatment ,rehabilitation formulated 2016 -2025

Way forward

Family planning- small family size, less babies in advanced maternal age

Preconception/Antenatal screening – genetic screening/counseling

Newborn screening- inexpensive clinical examination and karyotyping on suspicion

Equal/easy access to diagnostic facilities

Training and awareness programs for primary health care providers ,doctors, nurses,female health workers, birth attendants

Database of DS in hospitals /home in HMIS

MEDIA messages in public interest for detection / awareness

Prenatal diagnosis at to be added to ANC protocol

Can provide endorsement, resources and support.

To carry out activities which could not be accomplished alone

A better pool of experts and experience

Shared apprenticeship and exchange of know-how

An increased brand/public awareness

Legality of pursued action

APDSF