CFIDD head shares why he established the non-profit

Pago Pago, AMERICAN SAMOA — After defending his stance that his position as head of the Department of Human and Social Services (DHSS) and serving as the Director for the Center for Families of Individuals with Developmental Disabilities” (CFIDD) is not a conflict of interest, Muavaefaatasi John Edward Suisala shared with Samoa News the reason behind his decision to establish the non-profit CFIDD back in 2001.

He said in 1994, he returned to American Samoa (from Washington, D.C. where he worked for Congressman Eni F.H. Faleomavaega) with his wife (now ex-wife) and their two young children after he was appointed by Governor A.P. Lutali to establish and run the American Samoa Nutrition Assistance Program (commonly known as the Food Stamp Program) along with the WIC Program and the Territorial Administration on Aging (TAOA) that were later added to his portfolio.

“Two years after moving back home, my son was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and autism at the age of four. Since his diagnosis, we struggled to find available services, resources and support to help him. This was at a time when just a handful of people at the LBJ TMC, Public Health and DOE knew anything about ADHD and autism and related support services for children with ADHD/ autism were almost non-existent.”

As the years went by, they continued to struggle to get their son in the right school with the right support along with finding early education and medical intervention services. Fortunately, along the way, Muavaefaatas said God placed many people in their path who were able to help them find services and resources for their son.

Other parents of children with special needs heard of them and their struggles and started coming to their home with more information, assistance and support or just to talk and share similar struggles and frustrations.

Eventually, when they realized that they were not alone and there were more parents out there with the same challenges as theirs, the family decided to start a non-profit organization to provide a support system for parents like them to help them navigate the education and healthcare systems for their children; to educate parents and families on the rights of children with disabilities and how to use those rights to access existing services and advocate for improved intervention services; bring specialists to American Samoa to train parents on what they can do to get services for their children and school/healthcare workers on strategies and methods to help their children; and provide a place and a support group for parents and families and their children to get together to talk, share their experiences, struggles and triumphs or to simply talk.

“To make this work, my wife resigned from her ASG job with the American Samoa Arts Council to establish and run it. One of the people that the Lord placed in our path was a Special Education Specialist who not only worked closely with our son but also became a close friend and she provided us with valuable information. She agreed to join us in forming the Center for Families of Individuals with Developmental Disabilities (CFIDD) as the third incorporator,” he said.

 (Note: She left DOE not too long afterwards to become State Director of a program on disability where she continues to serve and make a difference. She also resigned as a CFIDD incorporator several years after CFIDD was incorporated.)

Muavaefaatasi said that CFIDD was incorporated as a non-profit organization in October 2001 after he resigned from DHSS to join the private sector. CFIDD applied for funding to setup a Community Parent Resource Center (CPRC), an after-school program for children with special needs or the Youth Extended Services (YES Program) and many other programs and support services for parents/families of children with disabilities.

He stated that one of the funders that CFIDD successfully applied to was the Developmental Disabilities Planning Council (DDPC) under DHSS who awarded sub-grants starting in Fiscal Year 2003.

He further stated that CFIDD also applied for funding from other sources to sustain operational costs and allow for expanded services, hiring up to 5 employees and contracting many off- island consultants and specialists who came to American Samoa to conduct training, technical assistance and support services for parents, families, school bus drivers, teachers and healthcare workers in a variety of areas.

“When I returned to DHSS in the later part of 2009, CFIDD was an ongoing recipient of DDPC sub-grants since 2003 and continues to be invited each subsequent fiscal year to submit proposals for funding,” Muavaefaatasi said.

“When my ex-wife resigned as CFIDD Project Director/ Executive Director in early 2012 after relocating to California with our children, I decided to downsize CFIDD operations by no longer applying for funds to support direct services and focusing only on advocacy work. (Note: Nellie Faumuina who has been with CFIDD for several years became Project Director and I became Executive Director).

“My decision not to close CFIDD was to keep alive our dream and passion of helping families of children and individuals with disabilities even if it is only through advocacy work.

“Coincidentally, the same year the DDPC federal grantor changed its national guidelines from providing sub-grants for direct services and focusing instead on promotion and advocacy work. This worked well with CFIDD’s downsizing plans.”

Fortunately, Muavaefaatasi said, all CFIDD employees found work elsewhere as the major grant for the CPRC and direct services ended. Since downsizing, CFIDD hired one or two employees at a time based on funding levels, funding availability, need and the type of advocacy activities required since CFIDD can no longer sustain full operational costs with small grant amounts that are not always consistently awarded and paid out.

The director also stated that since that time, CFIDD has focused on specific areas such as conducting training for daycare providers and bus owners/drivers to raise awareness and sensitivity to the needs of children and individuals with disabilities and the types of special accommodations they need to provide to meet their needs; running advertisements and infomercials to advocate for access to and special accommodations in daycare centers and on public transportation; conducting outreach to bus drivers at the marketplace to advocate for special accommodations for passengers with disabilities and disseminating brochures on Americans with Disabilities Act (ADA) requirements for public transportation; working with daycare providers on ADA requirements and promoting daycare centers that accepts and provides special accommodations for children with disabilities through media advertisements/infomercials and dissemination of brochures; and messaging using billboards on bus stops.

CFIDD was also funded by DHSS’ Partnership for Success (PFS) Program in 2016 to develop a strategic media campaign for all community substance abuse prevention coalitions and conduct a training on disseminating information and promoting their activities in preventing and reducing underage drinking; develop a Media Training Booklet for coalitions to use; and launch and manage the Underage Drinking – Prevention Fa’a Samoa Facebook page to promote three underage drinking prevention campaigns (“Stop! Underage Drinking”, “Alcohol Avoidance Pledge and Talk. They Hear You”); and messaging using billboards on bus stops.

“Moreover, when CFIDD stopped providing direct services when it began to downsize in 2012, I offered part of the building to the American Samoa WIC (ASWIC) Program to open their Tafuna Satellite Clinic free of charge,” he said. The original plan, according to Muavaefaatasi was for the ASWIC to open three satellite clinics in all of DOH’s three Community Health Centers (CHC) on Tutuila in addition to the main ASWIC clinic in Utulei.

“On December 1, 2020, I was informed by the DOC Director while I was in Honolulu that a lease agreement has been executed with Eye Vision to take over CFIDD’s current space and the owner would like to start construction as soon as possible.

“I was also informed that Governor Lolo Moliga’s plan was to have the optometrist practice, along with a dental clinic and a fitness center located across from the new TAOA compound to serve the senior citizens,” he said.

With the new lease agreement in place, the ASWIC Tafuna Satellite Clinic closed their operations the second week of December and they moved their services to their main clinic in Utulei. CFIDD also moved out of the building by December 21, 2020 and is now looking for a new office space.