Pediatric Unit for Special Children: SNM Hospital
Leh – Ladakh
Year 2 Annual Report: July 2011 – June 2012
Mission Statement: The SNM Pediatric Unit for Special Children will improve the quality of life for people with disabilities and their families by providing assessment and treatment services for children from birth to 18 years coming from all areas of Ladakh, who have a variety of disabilities. The unit will provide comprehensive, holistic care promoting respect and dignity for people with disabilities and will support them to lead meaningful, productive lives.
Background:
The need for a Pediatric Unit for Special Children was identified by a Central Level Hon’ble Minister (Govt. of India) Sh. Jai Ramesh. On 26th July 2010, after extensive planning and organization, the unit was inaugurated by Sh. Sham Lal Sharma Hon’ble Minister for Health, Horticulture & Floriculture J & K State, Sh. N. Rigzin Jora Hon’ble Minister for Tourism and Culture, J&K, and other dignitaries, State and District officers with funds from a one-time grant through the National Rural Health Mission.
2012 Training Summary:
The Ladakhi pediatric unit team (unit manager, physiotherapists and FMPHW) in partnership with the Canadian Rehabilitation team (pediatrician, physiotherapist, occupational therapist and special educator) worked together in June 2012 to assess patients at the unit and in the community.
Topics:
1) Patient Referrals:
Recruitment of new patients continues to be a challenge for the unit. On average, 20 new patients access the unit each year and this results in an average of 150 assessment/treatment sessions per year. Reasons for low numbers include but are not limited to the short road travel season, harvest time in summer, lack of information about child development and lack of awareness of the unit.
2) Outreach:
Outreach services are required from the unit in order to access more children with disabilities. Currently, the lack of vehicle use prevents this. However, during the
2012 training period, 2 outreaches were completed to Chuchot Hostel and the Khaltse Disability Assessment Camp. These outreaches were in collaboration with the Education Department of Leh.
3) Orthotics:
The need for a specialized splinting service is imperative for the pediatric unit. Several children require custom made orthotics or adjustments made to existing splints. Currently, the unit does not have any splinting material beyond plaster so they are unable to offer this essential service for the children accessing the unit. There is the potential for the DDRC (District Disability Resource Centre) to rejoin the unit with prosthetic and orthotic services. Some of their equipment and supplies remain in the unit, but are not adding any value to the services provided. Discussions are underway for the re-establishment of the DDRC service and unit staff is actively advocating for this to happen.
4) Human Resources:
Currently there is 1 full-time physiotherapist and 1 part-time physiotherapist working in the unit. Their time is divided between the outpatient orthopedic unit and the pediatric unit for special children. There is also 1 unit manager and 1 FMPHW (i.e. health assistant). In order to offer a comprehensive assessment and treatment service, the unit requires a special educator and an occupational therapist. Due to this
staffing situation, the focus of the unit is on developmental physical skills only. There is a distinct gap in services for lifeskills training and educational needs of children with disabilities. Speech therapy services are offered through the ENT department at SNM Hospital.
5) Coordination with Community Services:
Based on recognized lack of awareness of the unit both within the hospital and the community, coordination with community services is essential. The unit is currently collaborating with the Education department because both are government services. Further coordination is required with other disability services, i.e. REWA, because there is some sharing of caseloads. It is poor practice for information not to be shared when physiotherapists from two different services are treating the same children. Furthermore, stronger coordination with community services will enhance awareness and therefore, referrals to the unit.
6) Summary of Outcomes:
Services provided this year to families by the unit’s professional staff included:
7) Demographics:
Population of Ladakh: 130,000
Estimated # of children with disabilities: 1000 (estimated)
Patient Age
Groups
2010-2011
Patients
2011-2012
<1 y
4
1
1-3
12
7
4-6
11
2
7-12
9
13-19
n/a
20+
3
Type of Disability
# of cases July 2010 – June 2012
Cerebral Palsy (CP)
17
Developmental Delay
30
Spina Bifida
Down’s Syndrome
Mental Retardation
Club-feet
Seizure Disorder
Muscle Weakness
Mental Health
Kyphosis
Autism
Speech delay
Referral Source of Total patients
Doctors from hospital
Other hospital staff
Radio adverts
Word-of- mouth
23
0
10
14
Residence
Leh-
Kharu
Khaltse
Nubra
Nyoma
Tangste
Kargil
20
5
8) Recommendations:
1. The hospital must recognize the value that new human resources will add to the unit and should take necessary steps to recruit a special educator, occupational therapist or rehabilitation assistant, etc.
2. Ongoing awareness of disability issues and rehabilitation to the public for continued referrals to the Pediatric Unit for Special Children. This must be carried with regular monthly radio announcements.
a. The unit brochure will be converted to black & white and emailed to Norboo, Unit Manager for printing and disbursement to PHCs, etc.
b. Additionally, the unit staff can use the prepared power point presentation for increasing awareness of community organizations/groups.
3. Follow-up phone calls to all registered patients should be completed on a rotating monthly basis. If new issues are present, child should be invited back to unit or outreach should be planned as possible.
a. The ENT vehicle has been approved for unit staff to use 1 day per week.
4. Community outreach and parent education must continue through Block-level disability assessment camps, in coordination with the Education department.
5. An accessible/inclusive playground will be constructed outside of the unit for use in therapy sessions and for families waiting for appointments.
6. The unit requires access to petty cash for ongoing supplies for the unit – staff can approach MS or deputy MS for reimbursement of expenses.
7. Hostel accommodation for families is required for non-Leh residents to attend the unit for medical and rehabilitation services.
8. Sustainable funding is required for equipment resources and professional development
a. Orthotics materials must be ordered for use by unit physiotherapists while
the decision regarding the DDRC P & O’s is being made.
b. Exposure training can be in Delhi for the summer of 2013 in required areas of splinting, basic OT and further experience with pediatric neurodevelopmental diagnoses– staff will require permission to attend and reimbursement of travel expenses.9. The Canadian training team will return for additional training as requested by the Ladakhi team and as per available funding.