The dream of a special place

By: Dang U Koe, ASP Chair Emeritus

Children with autism become adults – and their parents and siblings cannot take care of them forever.

MANILA, Philippines -- Children with autism grow up — they become adults. Most of the childhood behavioral and cognitive impairments continue, but with age, physical growth and new psychosocial needs emerge.

In many parts of the world, residential programs for adults with autism have been established. These programs take many forms to meet the wide spectrum of autism needs — from supervised semi independent living to intensively supervised group home care.

The residents’ access to occupational and recreational programs and adequate medical care is an important feature of these programs.

Our Angel Talker this week is Prof. Abelardo Apollo David, Jr., more popularly known as Teacher Archie. He is the executive director of the Independent Living Learning Centre (ILLC), the Rehabilitation and Empowerment of Adults and Children with Handicap (REACH) Foundation, and the Quality Life Discoveries.

There is no residential facility for adults with autism in the Philippines yet. The existing practice is for Filipino adults with autism to be scared for by their families. Services needed by adults with autism include day programs that further develop their social and cognitive abilities, work opportunities to apply their learned skills, recreational activities, and most importantly, residential facilities wherein an individual with autism can live in the company of their peers.

Family-home care certainly offers many benefits to the adult with autism. However, family home care also has important limitations. A primary one is that, as the individual with autism ages, so does his/her parents. The individual with autism himself will grow old, continue to need 24/7 assistance for daily living as well as increased medical attention. Those parents will one day pass away. Who will meet these needs? Who will provide the care?

For the lucky ones who have grown up with caring siblings there is the expectation that those siblings will become the surrogate parents. There is no guarantee that siblings or other concerned family members, who will have lives and challenges of their own will have the continued ability interest, or willingness, to provide to fill that role.

The rationale for residential programs for adults with autism lies not only in meeting concerns for the individuals’ future, but also for meeting their present needs. The therapeutic atmosphere that a well-run adult group home can offer will enhance the psychological and social life of these individuals. Such benefits will lie in the quality of the various programs, educational, occupational, and recreational made available to the group home residents.

Realizing the need for residential programs for adults with autism in the Philippines, Dr. Lirio Sobreviñas-Covey spearheaded the establishment of the Association for Adults with Autism, Philippines, Inc. (AAAP,), a non-stock, non-profit organization duly registered at the Securities and Exchange Commission of the Philippines last March 28, 2011. Covey is currently professor of clinical psychology, and senior research scientist at Columbia University. She has resided in New York for over 40 years. And this is her story:

Person with autism Mikey experienced living in a home away from his family.

Mikey is now 33 years old. He moved to a group home 11 years ago. The home is in the lovely town of Armonk, New York — a 40-minute drive from his original home where he grew up and where my husband and I still live.

He lives with five other adult men, all of them have autistic disorder at the mild to severe level. They receive seven-day/24-hour supervision. Each one attends a work program from Monday to Friday. Weekends are their recreational and rest days. For Mikey, most weekends are spent with us, his family.

Mikey and his mom Lirio in Cebu

We have a weekend home in Long Island, New York, where we gather with Billy, (our first-born), his wife, and their two little girls. Because Mikey’s housemates regularly engage in recreational activities during the weekends, we take Mikey with us only every other weekend. On the day that Mikey moved into his group home, as I exited his new house, the residential supervisor said to me — “Enjoy your freedom”. Indeed, it was a kind of free-dom. My time was much more my own. No more rushing home from work or from an evening out so that Mikey’s nanny herself could go home. Freedom…to go away on long weekends, for extended weeks-long vacation trips, or simply dinner, with the assurance that Mikey would be in caring hands.

Nevertheless, I missed Mikey very much, and he missed us, his family, too.So I learned to look at the big picture. Mikey is blessed with multiple environments. He enjoys the “best of two worlds”. With supervision from a team of caregivers, he lives in his own home with his peers where he can live with dignity and comfort. Periodically, they socialize with other group home residences at dances and parties.

During the weekdays he goes to a work and recreational environment. Most weekends and holidays, he joins us his family, as most other adults do. As for me and my husband, our thoughts are for the future.

Should we become unable to care for Mikey for reasons of illness or death, we are assured that, in a supervised group home setting, people who know him well will be there for him. We realize we will not be around always, so we have to let go, enabling him to grow some more and live in a sustaining setting.

If our current plans prevail, Armonk house will not be Mikey’s home for always. My husband and I, along with Billy and his family, are planning to return to live in the Philippines. This decision has been made with much thought, and prayers for discernment.

As our working life here in the US comes to a close, and still feeling strong and productive, we wish to give back, with our learned skills, to the Philippines and to also enjoy the richness of family life and the pleasures of long-time friendships.

We will take Mikey when we go back. We would like him to experience the joys of his large Filipino family and the Filipino culture, too.

Our concerns for him remain the same as they would be if we live in the US. Who will take care of him when we are no longer able? During my visits to Manila, it did not take long to recognize that there are many Filipinos like Mikey. Along with their many daily living needs, they will develop other needs — for independence from their parents, to live a life of their own, with their peers.

This life style for adults with autism, even those with moderate to profound impairments, is happening in many residences across the world. It does not yet exist in the Philippines. This is a dream that I would like to become a reality.

A safe, secure, comfortable, productive, wholesome residential environment where Mikey and other adults like him can live in their own homes, together, securely, comfort-ably, and productively, even when my husband and I am gone.

Mikey (in blue toga) during his graduation

A special place

At present, three long-standing organizations with historical experience in assisting and caring for disabled populations are represented in the AAAP board of directors: 1) the Brothers of Charity, an international organization based in Rome, Italy, that is devoted to the education and care of mentally and psychiatrically challenged individuals;

2) the Autism Society Philip-pines — a long-standing national organization with the goal of improving the lives of individuals with autism in the Philippines; and

3) the Independent Learning and Living Center, an educational facility that aims to promote the optimum level of independence and quality of life of youth with developmental conditions.

The AAAP aims to build A Special Place, a residential care facility that can provide long term care and assistance to Filipino adults with autism.

When completed, A Special Place is envisioned to consist of chalets located in a sprawling property with cool weather, to negate the need for air-conditioning; high enough altitude to protect the residents from possible flooding as may occur due to weather conditions; access to urban conveniences such as grocery stores, malls, restaurants, movie houses, and access to hospitals and other medical facilities.

A Special Place will adapt an independent living program that will combine elements of the independent group home model and the farmstead model followed in the US and in Europe. The independent group home model consists of the residential facility only; the residents are transported on a daily basis to their work places during the week and to recreational and entertainment facilities during weekends and vacations.

In the farmstead model, the work facilities (for example, vegetable or flower gardens tended and developed by the residents) and the recreational facilities (for example, basketball courts or swimming pool) are located within the site of the group homes. Learning facilities will include staff time for enabling the residents to advance their academic skills such as writing, reading, and arithmetic at their individual pace.

Specially-trained and certified employees will be assigned to each home. These staff will include personnel who provide direct service to the residents, including medication administration and assistance in activities of daily living, as needed.

The homes will be staffed as needed by professional clinicians such as nurses, psychologists, and occupational therapists.

Uploaded with permission

Acknowledgment to Manila Bulletin: The dream of a Special Place