General Objective: To improve the SRH knowledge gap of and friendly SRH services for adolescents and youth with autism and related developmental disorders in Finfine/Addis Ababa, Ethiopia.

Beneficiaries: Adolescents and youth with autism and related developmental disorders aged 10 – 24 (Classified in two categories for specific intervention; 10-15 & 16-24)

Area of Operation: In all 10 sub cities of Addis Ababa

Project Duration: July 2018 – July 2020

Donor: The David and Lucile Packard Foundation

Project Background:

Initiated in May 2002, Nia Foundation is an indigenous, non-profit and non-governmental humanitarian organization established from the outset to alleviating the all rounded challenges faced by persons with autism and other related developmental disorders, and young men and women living in challenging socio-economic circumstances. Having made the necessary multi-sectorial preparations and forging partnerships with the government, national and international NGOs, Nia Foundation was legally registered and licensed by the FDRE Ministry of Justice in 12th January 2006. Once again, the foundation is reregistered in November 2009 by the FDRE Charities and Societies Agency Proclamation No. 621/2009, as Ethiopian Residents Charity Organization with registration No.0854 and permitted to operate in all regional states of the country. The head office is located in Addis Ababa Nifas Silk Lafto Sub City, Woreda 04, House # 887.

The founders of the foundation opened the Joy center in a small rented house with limited teaching and training aid materials and staff. The center initially started its operation by serving one child with autism only. Soon after opening the center, the management was organized and the board of directors filled with very committed professionals was formed.

The foundation was actively engaged in community awareness creation activities side by side with the center based holistic rehabilitation services, and the center attracted different organizations and individuals interested to visit our work and be part of it. Our awareness creation engagements also encouraged parents to send their confined children with autism to the center so that the number of children we serve increased through time to 13 in 2005, 24 in 2007, 40 in 2009, and now above 80.

Our awareness raising engagements are mainly focused on transmitting information to the public concerning mainly the cause, nature, characteristics, psychosocial & economic impacts, and intervention methods of Autism and lately focusing on the much required systemic response from the government and other stakeholders to the issue.

We were very successful through the years in implementing an intensive center based holistic rehabilitation program which showed very prominent and encouraging outcomes in the life conditions of the children we serve and their parents. Most of the children with autism that we rehabilitated are showing a huge progress in terms of their academic, speech, self-help, social interaction, physical and occupational skills. It is also our reward that the psychosocial and economic support mechanisms we implement for parents of children with Autism are being fruitful in the transformation and stabilization of the whole family.

In response to the ever increasing demand from the community for our services and our internal drive to reach out further, we are now in a new strategic plan period where we are focused on expanding to new places both in the capital and regional states. In line with that, we are in track to establish the first of its kind center of excellence for autism and even practically involved to create access for inclusive education in regular formal education system as well.

Nia Foundation and the Joy Center are equipped with sufficient administrative and program staff with different profession and background necessary for the proper execution of organizational programs in a well monitored system.

Project Justification:

Reproductive health and sexuality encompasses the sexual knowledge, beliefs, attitudes, values, and behaviors of individual’s sexual activity, sexual desires, birth control, sexually transmitted infections, and pregnancy. It is an important part of overall health of human beings.

Autism is a lifelong neuro-developmental disorder that affects the brain’s function. People in the spectrum often: find social interaction difficult, have problems with verbal and non-verbal communications, demonstrate restrictive and repetitive behavior, have a limited set of interests and activities, and experience over or under sensitivity to sounds, touch, tastes, smell, light or colors.

Typical of any human being, youth with autism and related developmental disorders  have the right to seek and receive information about sexuality and reproduction, access reproductive health services and contraception, live free from discrimination, coercion and violence; including rape and other sexual violence, forced pregnancy, abortion, sterilization, and marriage and the likes. (UNFPA Program of Action, 1994)

Nevertheless, the importance of providing quality and individualized RH and sexuality intervention is substantial because individuals with ASD have unique needs, that may not be addressed in RH and sexuality programs designed for the general public (Howlin, 1997).

Without individualized training regarding the various facets of RH and sexuality education, individuals with ASD may more likely be victims of sexual abuse and other RH problems. Individuals with ASD are at an increased risk of sexual abuse for at least two reasons: (a) they are often unable to provide reports to parents, professionals, or law enforcement about sexual abuse due to communication deficits; and (b) they may fail to report sexual abuse because they are unaware it is wrong (Howlin & Clements, 1995; Mansell et al., 1996).

As per Stokes & Kaur (2005), sexuality and RH intervention for individuals with ASD should be supported by three important factors. First, social deficits common to persons with ASD render them particularly prone to sexual abuse (Mansell, Sobsey, Wilgosh, & Zawallich, 1996). Second, persons with ASD have the universal right to learn about relationships, marriage, parenthood, and appropriate sexuality. Often, social skills and communication deficits render people with ASD unable to acquire RH rights, sexuality, relationship, and intimacy skills from the natural environment. Importantly, absence of a clear understanding of appropriate RH and sexuality increases the likelihood of inappropriate sexual behavior among persons with ASD. Finally, sexuality education for persons with ASD facilitates good hygiene, promotes health, and prevents unwanted pregnancy.

According to WHO’s (2008) global estimates of ASD prevalence, more than 625,000 persons with autism are estimated to live in Ethiopia. All the more, youth with autism and related disorder in the country are not given the right and resources they need to take care of their reproductive health and to meet their needs related to sexuality. It is also evident that reproductive health education and services are frequently unavailable or unfriendly for these segments of the community.

Despite continual advancements in interventions in the developed world, little attention has been given to the sexuality and RH issues in Ethiopia. In line with this, unaddressed SRH knowledge gap of and unfriendly SRH services for youth with autism and other related disorders is a major problem in the capital city and all over the country in general.

Unless these adversely affecting factors are dealt with, adolescents and youth with autism and related disorders would continue to be more vulnerable to discrimination, abuse and sexual harassment, STIs including HIV contracting, unwanted pregnancy, increased contraceptives un-met need, and deprived overall SRH rights. These factors would increase the inequality gap among the society and the rates of morbidity and mortality as well.

Therefore, this specific project aims to provide tangible opportunity to adolescents and youth with autism and related disorder in terms of developing their knowledge and practices towards improved SRH. Furthermore, the project will try to contribute to the better understanding of recommended approaches to mainstream Autism friendliness in RH programmes among government executives and other stakeholders, and increase public demand especially among parents/guardians of adolescents and youth with autism and related disorders for quality SRH services.

Specific Objectives:

• Develop the SRH Knowledge and Practice of 86 adolescents and youth with autism in the four specialized Autism centers including the Joy Center for Autism by 25% and 10% respectively;
• Increase the service claiming / demand rate of the public especially parents/guardians in the project area for their children with autism access to inclusive SRH Services at the intervention model facilities by 20%;
• Empower 50 key law makers and enforcers from federal and regional governments by equipping them with knowledge and skills in addressing the special SRH needs of persons with Autism ultimately realizing the availability of model Autism friendly facilities;

Results (Expected Outcomes):

• The SRH Knowledge & Practice of adolescents and youth with autism in specialized centers improved
• Public demand in creation for quality inclusive SRH services increased
• Improved SRH rights enforcement system benefiting adolescents and youth autism
• Five health centers became model and empowered in providing SRH cervices for children with Autism and related disorder
• Improved Autism friendly RH health facilities in the project area

Strategies and Activities

Strategy 1: Intervene to address the SRH Knowledge & Practice of adolescents and youth with autism in specialized centers

Activities

• Produce Teachers training manual on key concepts of understanding the special RH needs of adolescents and youth with Autism and how to train persons with Autism develop SRHR knowledge and practice
• Train 36 Teachers of the Joy Center and other three autism specialized centers (i.e. Nehemiah Autis Center, Kokebe Tsibah Primary School, Gudina Tumsa Training Center for Intellectually Disabled) on key concepts of understanding the special RH needs of adolescents and youth with Autism and how to train persons with Autism develop SRHR knowledge and practice
• Conduct SRHR knowledge and practice summative and formative assessments on 86 adolescents and youth with autism in Joy Center and other three autism specialized centers
• Train 86 adolescents and youth with autism in Joy Center and other three autism specialized centers to acquire the necessary SRHR knowledge and develop practices as part of the daily training program in the center
• Avail/purchase different training materials such as sanitary pads, human body models, RH PECs, videos

Strategy 2: Public demand creation for quality inclusive SRH services

Activities

• Produce TV spot and broadcast 5 times on two different TV stations each
• Produce two types of radio spots and broadcasted 60 times on each of 4 popular radio channels
• Produce and disseminate a summary of policy extract to inform/guide parents/guardians on how to claim inclusive SRHR services for their voiceless children in 1000 copies
• Organize an awareness raising workshop for 200 parents/guardians of adolescents and youth with autism on their children’s RH need and demand quality SRHR services to their children
• Organize frequent monthly experience sharing and learning discussions at the Joy Center with the parents of children enrolled at the center.
• Produce 5000 copies of leaflets in which providing information regarding availability of model health facilities that communicated to serve as a referral

Strategy 3: Engage the government/key policy makers and enforcers for understanding of the special SRH needs of persons with autism and make model Autism friendly facilities available

Activities

• Organize sensitization workshop for 50 key law makers from federal and regional governments to enlighten them with knowledge and skills in addressing the special SRH needs of persons with Autism and enact the realization of planned model Autism friendly facilities.
• Establish a steering committee with 6 members comprised of the most relevant sector representatives as selected by participants of engaging stakeholders to continuously work and evaluate works being done towards addressing policy gaps, reinforcing law of inclusion, scaling up model health facilities for improved SRH services for adolescents and youth with autism
• Organize bi-annual meetings for the steering committee to review progress and set directions to the rest of the whole targeted government group
• Produce newsletters and disseminated in 500 copies across key stakeholders

Sub Key Intervention: Enhance Autism friendly SRH services

• Determine selection criteria of model health centers and select ten health centers across all the sub cities of Addis Ababa as implementing partners and select in coordination with the health bureau and its subsequent offices
• Organize a half day sensitization workshop for 25 heads of implementing Health facilities and respective health office structures on the issue of modelling health centers for inclusive Autism friendly SRH services will be organized
• Produce Health Professionals training manual on key concepts of understanding the special RH needs of adolescents and youth with Autism and how to practice Autism friendly RH service provision
• Train 10 health professionals working in the MNCH departments of the implementing health centers on key concepts of understanding the special RH needs of adolescents and youth with Autism and how to practice Autism friendly RH service provision for three days.
• Develop quick reference booklet as on-the-job review desk tool and five types of informative and pictorial posters on Autism and SRH of 1000 & 500 copies respectively and distribute/poste among the implementing as well as across different private and public points of access in the city
• Organize bi-annual half day experience sharing visits and workshop at selected health centers between serving health professionals and teachers of joy centers
• Create referral linkages between implementing partners for medical attention and educational interventions seeking beneficiaries.
• At least 10% of health facilities’ visiting beneficiaries get intensive periodic training programs on developing SRH knowledge and practices at the Joy Center for Autism
• Produce documentary film to showcase the best practices of model health centers and the whole project interventions and popularized on the final course of the project period.
• Duplicate the produce documentary film in 1000 copies and disseminate across relevant stakeholders

Strategy 4: Enhance organizational capacity to monitor and evaluate the project and link to sustain expected outcomes

Activities

• Organize launching workshop to officially commence the project following operational agreement signing with 19 signatories and sub offices’ representatives
•  Organize annual consultative review meetings to monitor and evaluate project progress and outcomes
• Establish linkages with international partners distinguished to have expertise in the field. A personnel of medical background with special focus to the area of Autism and Reproductive Health will be brought over so as to help the project successfully undertake the health and teaching professionals’ trainings and subsequent trainings/service of adolescents and youth with autism.
• Make monthly follow-up visits to all the implementing health facilities and centers for data tracking and technical assistance purpose.
• Organize half a day project best practices and communication productions popularization workshop with 100 relevant stakeholders (government stakeholders, implementing partners, similar minded organizations, community groups, media, etc.)
• Conduct  baseline evaluation at the beginning of the project and end line evaluation at the end to evaluate intervention outcomes for the purpose of organizational learning and documenting information

Beneficiaries Selection Criteria

Our beneficiaries are adolescents and youth with autism and related developmental disorders aged 10 – 24 (Classified in two categories for specific intervention; 10-15 & 16-24). Our selection criteria are a bit flexible for the purpose of creating better opportunity in accepting a range of in need adolescence and youth with autism and related disorder in the project intervention area but the main selection criteria of enrolled in the project as a beneficiary are;

• Adolescence and youth with autism and related disorder enrolled in Joy center for autism
• Adolescence and youth with autism and related disorder enrolled other three specialized centers
• Adolescence and youth with autism and related disorder the project area

As per the aforementioned criteria all signatories (bureau of education, health and worker’s and social affairs) will be consulted and involved in the selection process of beneficiaries.

Inputs                        

Material: All 4 specialized have all the necessary though insufficient infrastructure in terms of sexual and reproductive health facilities in addition to the necessary SRH training materials available those centers. The selected private and government health centers are relatively have sufficient capacity in terms of infrastructure and materials, though they may not accommodate the special SRH of the beneficiaries. On the other hand, all specialized centers have more or less sufficient rooms and apparatuses for administrative tasks and their staffs are equipped with necessary office materials.

Finance: For the purpose of executing the project successfully there is an apparent need for convenient financial allocation. The total budget needed, 5,442,479.00 birr is secured from Lucy and Packard foundation Ethiopia.

Manpower: Full time employed and to be employed administrative and programmatic personnel are the key inputs for the successful achievements of our project objectives. The necessary project staff will be maintained and recruited for the whole project duration as they hold a crucial role in the overall project execution and success. So far we have a total of 41 full time employees working on our center for autism and we will be having one additional staff during the project period. Of the total 33 would be females. The staff will be comprised of different professionals including managers, programmers, nurses and related health professionals, special needs educators, teachers and other administrative staff. (The detail manpower plan of the project is annexed)

Assumption and risks

Assumption

• Relevant governmental bodies’ involvement is expected: for the successful execution of the project activities and for the sake of monitoring and evaluation as well of the overall project progress and outcome, the relevant government stakeholders’ active involvement has a crucial role. In this regard, their holistic support during all the stages of the project is expected to be in place.
• Assistance, strong cooperation and willingness from various stakeholders: stakeholders like private and government health centers, academic and research institutions are expected to involve with consultation and technical assistance. Moreover, development agencies and individual donors are expected in taking apart for successful execution of the project.

Risk

• Risk of maintaining dependability and reliability of health centers in which the project take part: the major risk we see towards the project is the fact that effective execution partially would be in the hands of key project stakeholders such as the health facilities. But we strongly believe that through continuous mentoring, supervision and follow up, the risk will be minimized much if not avoided.

Risk Mitigation

• Deployment of continuous mentoring, supervision and follow up, the risk will be minimized much if not avoided.

Stakeholders Analysis

S.N	Stakeholder	Role
1	FDRE Charities and Societies Agency	–     Appraising projects/programs, technically assist, and provide and renew the legal and operational license
2	Addis Ababa Finance and Economic Development Bureau	–     Facilitate and coordinate the signing of the project agreement –     Signing the project agreement –     Circulating government policies and regulations –     Mediate and provide the necessary support if conflict arises –     Monitor and evaluate the project –     Facilitate duty free importation of items and other privileges
3	Addis Ababa Health Bureau	–     Appraise the project proposal and forward comments on it –     Signing the project agreement –     Monitor and evaluate the project –     Assist the project implementation and provide necessary technical support
4	Addis Ababa Labor and Social Affairs Bureau	–     Appraise the project proposal and forward comments on it –     Signing the project agreement –     Monitor and evaluate the project –     Assist the project implementation and provide necessary technical support
5	Addis Ababa Education Bureau	–     Appraise the project proposal and forward comments on it –     Signing the project agreement –     Monitor and evaluate the project –     Assist the project implementation and provide necessary technical support
6	Sub City and woreda  Respective Signatory Offices	–     Supervise and provide comments on ongoing project activities –     Participate in beneficiary selection and screening –     Provide technical/ administrative support in community mobilization, networking, … –     Share information about government policies and directions –     Participate in baseline survey
7	Private and government health centers	–     Provide rooms for specialized service and desired materials –     Provide health personnel to deliver SRH service for adolescence and youth with autism and related disorder
7	Children and adolescence with autism	Participate in and utilize the SRH services provided to them
8	Parents of Autistic Children	Actively participate in project activities targeting them and Efficiently utilize the multifaceted project support
9	Donor Partner	Financial assistance to the project and monitor its proper implementation

 

Monitoring and Evaluation

Monitoring

The overall monitoring of the project implementation will be made on a weekly, monthly, quarterly and yearly basis by the organization’s management and program personnel. Whenever the need arises, amendments for any falters will be made timely in partnership with project stakeholders so that we can reach towards the successful completion of the project.

The project signatories also possess a great role in the project progress monitoring through means of project site visits.

Evaluation

An End Term and Terminal evaluations will be conducted in coordination with relevant stakeholders and signatories of the project agreement as per the preset indicators at baseline. Similarly, a midterm evaluation will be conducted midway during the projects life span. Pre and post-tests will also be used for training. To assess the impact of the training program for adolescents and youth with ASD in the specialized centers, a post rapid assessment will be done and evaluated against the pre assessment.  In addition, lessons sharing platforms are part of the project during and at the end of the project so as to assure best practices are properly shared and feedbacks are continuously received. 

Reporting

Physical & financial performance reports will be periodically submitted to concerned bodies. (i.e. quarterly for government signatories & annually to donor agency and monthly to the management of the organization). Reporting system will be in place to track information from implementing health facilities and centers as well.

Sustainability Strategy

This project will be part of the national interventions and can contribute to a special effort in addressing SRH needs among adolescents and youth with autism and other special needs. The project will exploit the existing legal framework and service provision system as it would help guarantee sustainability of improving the SRH knowledge & practice of and friendly SRH services for youth with autism in the country owned by the state mainly. On the other hand, the enlightenment and capacity building interventions planned to be implemented among educators and health professionals will have an expanding and lasting effect by means of putting in the right places a human power to continually work to train and serve the targeted youth beyond the project life time.

Furthermore, this project is going to be implemented in close collaboration with different governmental and nongovernmental stakeholders who will have an extended career on the issue of SRH within the country. Best practices and lessons learned from the project implementation will also be well documented and shared in consideration to their importance to similar future interventions of the organization as well as other stakeholders’ continued engagements.

The organization will also strive to go beyond this project and its time boundary to address the reproductive health needs and sexuality issues of youth with autism and related disorder as it is one of its major programmatic intervention areas.

Phase out Strategy

As discussed above in the sustainability strategy, the project is meant to last beyond its specified period. Partnerships are foreseen to be emerged out of the project implementation to guarantee the continuation of similar interventions. In case of such an intervention nature of the organization comes to an end though, the necessary handing over of fixed assets to the Charities and Societies Agency will be made according to the effective proclamation (proclamation # 621/2009).