NEW JONI AND FRIENDS “JONI’S HOUSE” – FIRST ONE IN THE WORLD!
Esta historia se escribe en Español = This story is also written in Spanish here:
Here is a bit of background: Our Salvadoran friend Claudia Aguirre is one of three siblings in a close-knit Christian, supportive family. When she suffered a serious diving accident in a pool at age 11 resulting in fractured vertebrae, she immediately became a quadriplegic. The family soon needed to focus and center all attention and energy on finding her medical resources and therapies. Siblings Monica and Gerardo fell into the background. They could have become resentful and bitter. Instead, they grew to accept their situation and as adults have joined forces with their sister, Claudia, and parents to work toward helping other families to advocate for the needs of people with disabilities in El Salvador.
Joni Eareckson Tada, who became a quadriplegic at age 17 after suffering fractures of two cervical vertebrae as a result of a diving accident in the Chesapeake Bay, wrote a book about her experience which closely parallels Claudia’s accident. Claudia immediately identified with Joni and began to follow the Joni and Friends ministry, a Christian-based advocacy group for people with disabilities established by Joni Eareckson Tada.
Soon Claudia and her entire family moved from following Joni and Friends, to becoming integrally involved with the organization by serving as its Central American ambassadors by organizing annual retreats for families of children or adults with disabilities, wheelchair distributions, among other programs. They now serve as role models and world leaders in the Joni and Friends organization. All family members participate. Their father, Alfredo, worked tirelessly to advocate for people with disabilities needs until his death.
The Joni’s House is a brand-new extension of the organization. Its concept is to provide a physical location for handicapped folks to receive therapies and training. Certain hub countries in developing areas around the world have been identified to begin this idea. They include Brazil, Peru, China, Ukraine, and El Salvador. We are so excited that San Salvador, El Salvador, was chosen as its first site in the world. It will be a role model for future locations and will work in collaboration with folks from those other hub countries when they are ready to establish their own establishments.
My partner and I are delighted to be getting a sneak preview into an exciting new Joni and Friends venture. We had the opportunity to speak with Claudia and her sister, Monica, who serves as director of the Joni’s House. It is a privilege to know this conscientious, hard-working family and remain in touch with them.
From Claudia and Monica:
The four pillars of Joni and Friends around which they design their programs are: 1) physical needs, 2) spiritual needs, 3) economic needs, and 4) social needs. For example, twice a year we distribute wheelchairs and other mobility devices such as canes and walkers. They come from the U.S. in shipping containers; the wheelchairs have been refurbished in prisons in Texas and other prisons. Both adult and child-sized chairs are provided. In March we received about 250. We try not to advertise in social media because it is not uncommon to receive 300 requests per day.
Claudia shares that, “A weekend retreat for families and their children or adults with disabilities is the program I have been directly involved with for many years, and I always look forward to it. Everyone has a good time being treated to time away from home in a special setting. It requires year-round fundraising on my part to make the event happen.
My own duties with Joni and Friends cover all of Central America extending from Mexico to Panama, so my sister Monica is serving as director of the new Joni’s House. She gave up her coveted full-time job at the British Embassy in order to do this.” Monica’s law background is helpful in some of the situations that arise as they spearhead this new venture. Our brother, Gerardo, works in the accessible infrastructure of our organization. He is responsible for a wheelchair restoration center and warehousing details along with another family friend who also has a disability, for example.
We were fortunate to find an existing building the city had repossessed and was willing to rent us for a very reasonable cost with a five-year lease. We are two years and four months (at the time of our interview) into our current five-year lease. At the end of the five-year lease we will re-evaluate if we want to remain at this location or if we need a larger facility. What happens in the next three and a half years remaining on the lease will determine if we stay or find an alternate location. This building was repurposed for our needs. This site offers us four rooms and gardens.
Services we are providing include physical, occupational, and speech therapies, as well as special education services. The physical location also offers a space for parents to get together for various functions as well as siblings.
We have been slow to open services fully due to COVID, but that has also given us time to begin more purposefully in our planning with some children we already know from our retreats, from word of mouth, or from doctors’ recommendations. So far we average treating six patients a day with a total of about 100 families. We are serving ages 1-20 or 25 years old. The older ones are receiving help to prepare to handle jobs, making alliance with others, learning to budget and learning other economics involved in independent living.
(We ask if there are other groups in the country providing the same treatments as Joni and Friends.) Basically, yes and no. Other places may provide PT and OT (physical and occupational therapy); other groups provide medical care. What Joni’s House does is provide a 4-pronged approach all in one location. It addresses spiritual, social, physical, and economic needs of the clients. Here a project manager leads each of those four areas. Monica serves as project manager for the economic area in addition to being the overall director with administrative duties. She comes with previous experience working in that capacity with the UN. Wearing the economic project manager hat, she tends to see older clients preparing for the job market. Two women recently who had come to them dysfunctional without their guidance completed their business goals. The Christian focus underlying all services is another big difference from most other facilities serving people with disabilities.
As with any new adventure there will be a learning curve. Initially we used only volunteer staff, and 75% of our staff are still volunteer. But we also recognize that model is too unpredictable and just recently hired a part-time therapist three days a week; this position will give greater predictability and continuity of services. We just hired a new special education volunteer. We recognize that as needs rise and COVID restrictions begin to relax, we will need to hire more full-time staff.
At first we also were providing all services free of charge but soon learned parents were not fully invested in their child’s treatment and often failed to come for scheduled appointments leaving a hole in their therapist’s schedule. We now charge a very minimal amount and are beginning to charge based on their income level after doing a social and economic study of the family’s situation. Some families pay $1 a session, for example. We receive no government funding.
Joni and Friends corporate pays for the building rent and supplies, but we will eventually need to be generating our own cash flow. We have a person responsible for making alliances with other organizations and for doing fundraising. Right now we are in the midst of planning a golf tournament.
Clients come to us with an evaluation, but we evaluate while they are with us and establish goals. The parents/caregivers are required to agree to providing follow-up support at home. They must sign a document to that effect before we begin treatment. The group we are currently seeing is a cluster of young autistic boys. We also want to be able to treat both visually and hearing-impaired. All staff will be required to take sign language soon. A friend of ours works with Starkey Foundation to provide hearing aids and follow-up care for them.
Respite care is something we are beginning to provide; it gives parents and caregivers a break, even if only for a few hours a day. “Luke 14 Banquets” is a Joni and Friends we are starting. The concept is for families to come together for a meal while their children enjoy adult-supervised play. They are treated as guests, and they can interact with other adults while their children are on the premises and cared for by trained qualified caregivers. The premise for this idea comes from the Biblical passage Luke 14: 13-14 “When you give a feast, invite the poor, the crippled, the lame, and the blind; and you will be blessed, because they are not able to pay you back. . .”
Another facet of respite care we hope to begin is for a volunteer to go into a home and help with the child while the mom/caregiver has a chance to get out for a short time to run errands, for example. We recognize living and caring for a disabled individual is intensive 24/7 care that can benefit from short breaks. Respite is not designed for overnight care, but rather for a few hours during the day.
In 2022 a new law in our country mandates that businesses with more than 20 employees must hire one person with disabilities. It is compulsory. We have received information and training in it and are advocating for this with businesses. It is also spreading into the education system. A new component of all is that health insurance may be required to provide for treatment of handicapped. That is still unclear, and we need to further explore that.
A big part of any Joni’s House is the spiritual component. This is a Christ-centered program of spiritual counseling with pastors. If a family is hesitant or resistant to this, we will not deny their child treatment; however, we strongly encourage them to participate. Even if they choose not to involve themselves directly in the counseling, we hope that by observing our own strong faith and love modeled during their child’s treatment, they may come to see the value of a Christian component in their lives.
It is still too early to know how long a child will remain in treatment at Joni’s House before they are discharged with a home treatment plan. When we are fully open, we anticipate that demand for our services will be great. Needs certainly are great in the country and we don’t know how far families will be willing to travel. The staff will have to make a needs assessment and come up with criteria on what determines discharge – completing goals, age, ability of a family to provide follow-up support. Once we get up and running to full capacity we anticipate having to go to waiting lists for our services. Currently we have ten children on a waiting list.
It is our hope that parents and caregivers will cooperate in following through with home exercises and activities to continue to see improvement with their child. One of our greatest frustrations thus far was receiving a call about a child with severe needs, but when we called the parent to schedule, that parent had multiple excuses for not bringing the child in for treatment. She felt the child would never improve anyway and claimed she didn’t have time to bring him in. Hearing this lack of effort on the part of this parent was tough and so unfortunate for the child who misses out on improvement. We can only hope it is the exception and not the rule we will be experiencing.
Another frustration is a parent demanding certain unrealistic goals for their child who is developmentally not yet ready to accomplish them. We have to work to convince the parents they must wait until the child has a readiness for their expectations. That type of parent tends to shop around from one treatment facility to another to make demands. Again, that is a small minority of parents.
The health ministry within our government is required to oversee our operation. We, in turn, are required to work in tandem with the agency to report suspected neglect and abuse to government authorities. We don’t expect many issues. Parents don’t come to us unless they want to cooperate. We are training our staff, hiring only qualified therapists, and being transparent in all aspects of our treatments.
Monica stresses, “One of the areas I feel a deep need to focus on is sibling support. Having been a sibling of a sister whose needs consumed the family’s energy, I am sensitive to siblings who become invisible children and who can be overlooked and lonely. I want to create a haven for siblings with spaces for them to feel dignified and happy. We have already started sibling support and I have so many other ideas I want to try. That may be the most fulfilling area for me personally.” Since we now have a physical space, we hope to provide support groups for parents and siblings also.
Note: Sadly, Alfredo, the family patriarch, has passed away and we all greatly miss his optimism and upbeat personality. However, he and his wife, Mercedes, worked arduously to establish and register an NGO on behalf of their family for handicapped persons before he died. His foresight turned out to be a fortuitous and crucial step for what is happening now.
Our family wants to honor our dad’s legacy for having the foresight to establish an NGO on behalf of handicapped individuals. With that vision and the necessary paperwork in place, it was an easier transition to partner with Joni and Friends to work in tandem on this venture. We could not have done that just as an interested family.
Monica shares, “Our work is intensive as we try to tailor the treatment to each individual’s needs with the resources we have available. It could easily be all-consuming. I give myself breaks on weekends to relax, watch movies, do fun things in order to re-charge my energies for the work week ahead.”
We feel much can be accomplished when the whole family along with the professional team works together to support their child or young adult. It is our ardent hope that long after we three kids are gone, we will have built a strong enough foundation that others will be able to follow in our footsteps and continue this legacy, whether it’s our own children, dedicated workers, or anyone else with a passion for people with disabilities. A precursor must be that they be guided by God’s light shining down to guide the way.
Honoring a family legacy, creating spaces of dignity, advocating and serving families of handicapped with a Christian focus -lofty goals for one family.
If this story motivates you to donate to Joni and Friends, find information at: https://www.joniandfriends.org/jonis-house-el-salvador/