Parents Build Alliances for the Future of their Disabled Children

For more than twenty-three years we have been the pioneers pushing for more support of rehabilitative services from the municipal education sector. In response to the need for services for children with disabilities, in 1996 FUNDABIEM–a private institution–established the first rehabilitation center for people with disabilities in the Guatemalan municipality of Panajachel. This location was chosen due to the importance of its geographic proximity, which favored the mobility of families with children.

Later, in San Lucas Tolimán, the Association of Parents and Friends of Persons with Disabilities was founded; it is known by acronym ASOPADIS. It started out in the home of one of the children’s parents. Due to a rapid increase in demand, we sought the help of prominent leaders known for supporting the cause. As a result, a private school decided to help by offering us one of their classrooms so we could provide continuity of services providing physical and speech therapy to an initial group of fewer than 15 children.

In order to expand our efforts, we successfully partnered with the Association for Coordinating Organizations by and for Persons with Disability (ACOPEDIS), which brings together sixteen organizations from six of the nineteen municipalities that make up the department (state) of Sololá. ACOPEDIS is a network that focuses on the locations that have established a Community Based Rehabilitation (CBR) strategy in regards to health, education, social life, livelihood, and empowerment.

In ASOPADIS, our services have grown to include escorting people with disabilities to medical and legal appointments, administrative and legal counsel, as well as vigilant oversight of full compliance with and respect for the human rights and principles set forth in the CRPD (which has been signed and ratified in Guatemala).

We’ve witnessed a lot of progress in the municipality of San Lucas Tolimán in the department (state) of Sololá, where the teaching staff at mainstream schools are beginning to show interest in the inclusion of children with disabilities. Staff members are participating in a process of training on inclusive education with the short-term goal of establishing inclusive practices in the educational system, at least on the local level.

“The struggle in the face of indifference is beginning to bear fruit. Spaces and rights, which in earlier times were off limits to people with disabilities, are beginning to open up, especially in the area of access to a quality education provided in equal conditions as established by the CRPD.”

We started with the premise that INFORMATION is needed, so that KNOWLEDGE can be gained, which in turn sparks COMMITMENT and ultimately translates into timely and effective ACTIONS. This strategy, known by its acronym ICCA, was applied in the following ways:

1. Promoting dialogues for advocacy with various players to address the issues of the rights of persons with disabilities and the principles established in the CRPD, as well as other laws within the Guatemalan legal system. The players we involved in these dialogues included:

• Municipal authorities
• Principals of different educational centers
• Local professionals such as doctors, attorneys, and social workers
• Representatives of governmental institutions such as the Ministries of both Health and Education, and the Guatemalan Institute of Social Security
• Student and community leaders

2. Visiting various educational centers in the municipality to dialogue with faculty, students, and parents about the rights of disabled people, active educational methodologies, and play as core principle and educational strategy (play leads to sports, which an element of social rehabilitation that gives dignity to persons with disabilities).

3. Establishing alliances between institutions and coordinating other services needed by people with disabilities. For example, in the area of health, persons with disabilities are evaluated by private specialists at little or no cost and donations of expensive medications are sought. In our case, the municipality helped us by paying part of the worker’s salaries. This gave visibility to the support offered by the authorities on disability issues.

In the same vein, alliances have been formed for participation in broad, national disability rights movements. A case in point is the work that ASOPADIS was able to achieve as a member of the broader COGUASDI coalition. COGUASDI–the Guatemalan Commission for the Social Oversight of Disability–is a coalition of 13 organizations. COGUASDI, including ASOPADIS, and two other networks of DPOs, worked to develop, gain input on, and propose, a new disability law, which was successfully presented to the appropriate commission in Congress in 2016.

4. Participating in networks to unify and coordinate our efforts in order to file actions with the appropriate governmental entities. Collaborating in a network has brought us mutual benefits. Our partner organizations benefit because each of them finds new allies. As a network we have a larger voice so the authorities have become more aware and responsive to disability-related issues.

5. Participating in the Municipal Councils on Development (COMUDES) where public projects financed by municipal funding are discussed. This is where the issues faced by people with disabilities have been presented, with particular emphasis on the lack of physical accessibility to public places. We have demanded that municipal disability policies be implemented so that municipal and central government resources may be assigned to this neglected segment of the population. In the same manner, we seek to participate in the Departmental Council on Development (CODEDEs) which already function at the (departmental) state level.

6. Participating in the Technical Board of Education where employees of the Ministry of Education, inclusive education specialists, and ACOPEDIS member organizations discuss the current situation of education. They also seek to establish a model that, using understanding the cultural, geographic, and social environment, leverages existing human and financial resources to present demands before the appropriate government courts and establish public policies that respond to the needs of the population.

Abel Henock Azañón Urízar, Esq.

I am a retired professor and until November 2016, I was a member of the ASOPADIS Board of Directors. I am on the advisory council of the Association of Parents and Friends of Persons with Disabilities (ASOPADIS), and coordinator of the project for Strengthening Inclusive Education in four municipalities in the department (state) of Sololá (San Lucas Tolimán, San Antonio Palopó, Santa Catarina Palopó, and San Andrés Semetabaj).

I am a representative of ASOPADIS in the Coordinating Association for Organizations by and for Persons with Disability of Sololá (ACOPEDIS) and in the Guatemalan Commission for the Social Oversight of Disability (COGUASDI).

A brochure for ASOPADIS is available below in Spanish.