CANKIDS HOME AWAY FROM HOME HAH

1. CANKIDS HOME AWAY FROM HOME HAH A “BRIDGE” BETWEEN HOSPITAL AND HOME - a holistic environment both for the child and the family during the long painful treatment, which provides both privacy for the family and the strength of a community tied together by their children’s illness.

2. DEVELOPING A MODEL FOR A HOME AWAY FROM HOME IN A DEVELOPING COUNTRY SCENARIO • Near A Cancer Centre/Hospital • Low Cost Model • Parent & Community Participation

3. Why create a HOME AWAY FROM HOME India has only a few specialized cancer centers, and the patient flow is also High to these centers More than 80% families come from outside the city to receive cancer treatment. At any given time there are 100-150 families of children in the city. For these, often economically disadvantaged families, the cost of treatment limits their access to accommodation.

4. EXISTING SCENARIO Typically the families put up in rented rooms or lodges. Though the lodges are cheap and provide basic amenities, they have problems of their own. 1stly the lodges are not catering to patients of any specific disease and therefore, children undergoing cancer treatment are often at risk of catching infections from patients with other infectious diseases. 2ndly the sanitation and hygiene at these places are not apt for patients undergoing cancer treatment due to their special requirements. 3rdly, the environment at the shelter homes is often dreary and not conducive for children who need special care and fun activities to keep them hale and happy, as well as for their behavioral, developmental and social needs.

5. PROJECT HAH : GOALS AND AIMS •  Provide outstation families with affordable, child appropriateaccommodation during treatment •  Create a low-cost option near the hospital, without substantialinvestment and low running and maintenance costs •  Empower parents to set up, manage and run the home and provide them employment generation opportunities •  Integrate project HAH into the treatment, care and support systems at the PCU – THEREBY IMPROVING THE OVERALL STANDARDS OF TREATMENT & CARE . KIDSCANenabling children faced with cancer . KIDSCANenabling children faced with cancer

6. concept of HAH • Low cost accommodation in a home like atmosphere, • Individual hygienic cooking facilities and common dining areas to cater to the children’s individual taste, failing appetites and need for healthy nutrition, which is vital for the success of their treatment • Health room facilities – to focus on hygiene, proper storage of medicines, and information and support for proper follow up of Doctor’s instructions • School Room – to ensure that children continue to receive education through Cankids Non Formal Education Program and to focus on their behavioural, developmental and social needs • Emotional and Psychosocial support by the Parent and Survivors groups as well as regular forums and meetings; and administrative support for letters to home, form filling, Government and other facilitation • Multifunctional areas for leisure, community activities, reintegration facilities, as well as to accommodate additional families in time of need. • Outings, recreational and community activities.

7. SERVICES PROVIDED • Accommodation • Cooking facilities • Care and Support: Health, Nutrition, Psychological, emotional support & information • School and multifunctional sitting /dining areas • Leisure, recreational and community activities • Administrative Assistance

8. ROLE OF CANKIDS • CanKids’ National Outreach Project team will support the Pediatric Cancer Unit (PCU) to develop an HAH in the vicinity of the Center. • The main areas of the Project Support are: • Needs Assessment & Developing a HAH Concept Suitable to the Cancer Center • Project Proposal • Site Evaluation • Technical Support for Building Plan, Design and Execution • Recruiting and Training Staff and Volunteer teams • Developing policies , manuals, procedures, charges • Resource Mobilization • Any other facilitation support • Budgets and Fiscal responsibility & accountability • RUNNING THE HAH • . 11. Monitoring ,Evaluation and Reporting • 12. Networking and linkages

9. OPTIONS AVAILABLE • Need based Approach • according to the need of the patients required accommodation facilities HAH can be developed in three models. • For below 5 families –Elementary: • For the small PCUs we need to find out Homes where we can accommodate five families on rent or as donation in kind. With the Support of Social Worker and parents it will be monitored. • b. For 6 – 22 families – Medium: • This model is already tested and successfully running in Delhi. • c. For above 22 – 50 families – Large : • This model may be developed in two ways: • getting support from Local NGOs or any Govt. Agencies and • Supporting any organization to run the project in partnership • According to the need the Project team can develop it in different style such as dormitory, Halls, Cubicles, or mix of all.

10. ORGANIZATIONAL CHART Project Management Team (Hospital, NGOs & partners) Public private partnership Control Team Project Development, Monitoring and Evaluation Team NOP Team of NGO Partner Building Team Fundraising Comm. Family Support Group – parents & survivors Project Team HAH Volunteer Team

11. Dispersal of Responsibility Parent & survivor support group Community Involvement Painting the Home; decorating the home Proper cleaning of Home with Parent Support Group Volunteer for teaching children at HAH Spend quality time in the weekends at HAH. Fundraising and contributions(in groups or individually encouraged) for building, equipping & sustaining home. Make rules for maintaining & running HAH and to support families Appoint HAH Supervisor Responsible for cleanliness of home Ensure Sustainability Fundraising for sustainability through community involvement CONTROL TEAM MOU between Site Owner and Cankids Design and Implement Project; Make budgets Monitor & Evaluate Project &budgets Coordinate with all groups for work to be done Ensure that Cankids gets approvals and legalities Ensure utilities are provided for the Home FUNDRAISING COMMITTEE BUILDING TEAM Apply for Electricity; Water; etc, Architect in final building aspect Hiring Contractors to do the work –civil, electrical, plumbing etc and Supervising progress of work Buying materials    Installing fFurnishing and fixtures Funding for the Project Cost For the Running and Maintenance Costs For Vehicle and its Running and Maintenance Cost Assist the PSG in their fundraising Assist the KCK

12. VOLUNTEER & COMMUNITY PARTICIPATION • In setting up Utilize in-house skills or friends to the maximum for the implementation of the project . Use creative ideas and young minds to make the home child friendly and cheerful environment. • In Running The parent support group (PSG) takes on responsibility of running HAH. They are the best placed to be primary decision makers and to make a implement rules and revise them from time to time • In sustainability The PSG, Survivors,Volunteers, community contribute their efforts, enthusiasm, time and patience, thereby minimizing costs, ensuring committed involvement, accountability and sustainability for the project in the long run

13. MONITORING & EVALUATION • Process Evaluation • The HAH will have a Project team and Project Officer to plan and manage the HAH activities and also for Monitoring and Evaluation of the system on monthly basis. An Operating manual will be developed for the smooth running of the HAH. • HAH Supervisor will interact on a day to day basis with the families staying there and be available to address problems and issues • HAH will use monitoring devices; like registers and feedback forms to capture the data for evaluation. With the help of HAH management team, HAH Supervisor will submit a monthly report for evaluation on functioning, expenditure, problem areas, new suggestions to the PSG and Management. • Meetings at frequent intervals will being held with all residents of the Home for feedback, problem and dispute resolution if any, and suggestions for improvement • A feedback form will be designed to determine whether the stakeholders are satisfied with the benefits and comfortable with the rules and regulations of the HAH

14. RESOURCE MOBILIZATION • GOVT AND OTHER ORGANIZATIONAL SUPPORT: • Infrastructure Support • Other aids • CAPITAL FUND • Donation/ Grants • CRS • Project Funding • Individual Donor • COMMUNITY PARTICIPATION: • Parent Networks • Volunteers • Social networks • RUNNING AND MAINTENANCE COST • Both Admin and Project Cost will be through regular Donor • Partnership / Alliance • ( CanKids will provide the Proposals for the same)

15. HAH Delhi Completes 5 years Kitchen HAH School Seating area Dormitory Floor Bunk beds

16. CELEBRATIONS School Room Doctor & Parent Counseling Parent Support Group-Forum Lets Play

17. CELEBRATIONS Playing Party games Delicious food Happy Birthday Kiddo !! Diwali @ HAH Diwali Raksha Bandhan LOHRI @ HAH Terrace

18. OUTINGS Visit to CWG Visit @ St.Dominic’s Church HAH Transport Metro Ride Garden of Five Senses

19. 2007 -2012 • Over 1500 families have stayed at the HAH . • When the Home is full to capacity there can be as many as 66 people – children and their parents /grandparents at the Home • If the family is on the pavement , we prioritize them and accommodate them in the School Room and multi- functional areas • We spent only Rs 6.5 lakhs on setting up the HAH. We have spent over Rs 40 lakhs on the HAH running and maintenance in the last 5 years THE HAH is now beginning to be full to capacity at all times and we are exploring setting up a 2nd HAH in Delhi

20. Home Away From Home ( HAH) for Children with Cancer, RCC Trivandrum

21. HAH, THIRUVANANTHAPURAM HAH In TVM 1st Inmates with Care taker Project team Rooms

22. WE ARE LOOKING FOR SUPPORT • Many other PCUs with whom we partner have requested for HAHs to provide outstation families with affordable, child appropriate accommodation during treatment • The HAHs we are hoping to set up are : • HAH ThakurPukur Kolkata • HAH CMC Vellore • HAH Chennai • HAH South Delhi -2 • HAH RGCI- Delhi • GCRI Ahmedabad

23. NEXT- HAH, KOLKATA We got request from SGCC& RI Hospital , Kolkata . Patient flow is 300 new and 800 follow up patients . Looking for a partner to develop the same.

24. NEXT- HAH, CMC VELLORE CMC Hospital also looking for the same support from us rather than any other . We need capital Budget for starting the same

25. NEXT- HAH, GCRI, Ahmadabad

26. NEXT- HAH, South Delhi ( 2nd One) Kalawati Saren Children’ Hospital Safdarjung Hospital GTB Hospital RP Centre

27. NEXT- HAH, Chennai for 5 Hospitals Apollo Chennai Adayar Ped. Surgery- ICH Hematology ICH Sankara Netralaya

28. The HAH Project is aimed to be replicated near other cancer centers in Delhi, India and other developing countries AS AN EASY TO DO, LOW COST OPTION FOR DEVELOPING COUNTRIES BECAUSE WE ARE ABLE, BECAUSE WE CAN

29. Change for Childhood Cancer in India These Families Deserve the Best • The best possible treatment and care • The best possible social and economic support • The best possible emotional support • Reintegration into society • Continuity of Care SIOP –ICCCPO guidelines They deserve a chance to be happy. To enjoy and have fun. To be cosseted and spoiled . TO CELEBRATE LIFE Because we are able … Because We Can