HAPPEN to all of us
Fundashon Alton Paas Un futuro sin limitashon
2 0 2 0 I M PA C T R E P O R T
When Alton Paas asked me to write the editorial for this Impact Report 2020, I was surprised at first. To be honest, I was also honored and especially, immediately enthusiastic. As editor-in-chief of LaVida Curaçao, I’m modestly involved as a volunteer for the Fundashon Alton Paas every year. For this publication, I talked to people who are, in one way or another, connected with the organization and I put their stories down on paper. These conversations have made a great impact on me. Stories from a world that you - if not dealing with a disability - hardly know about. By recording these beautiful conversations I had the opportunity to meet special people, I have gained a unique insight into the Fundashon Alton Paas. Probably the reason why Alton asked me to write this editorial. If I had to explain in a few key words how Fundashon Alton Paas makes a difference, the words; result, camaraderie, dignity, solution, perseverance and vision immediately come to mind. Fundashon Alton Paas works result oriented. Whether it entails the yearly projects they set up, or the improvement achieved by clients visiting the AP Center. With camaraderie, I think of the joyful faces, who all talk about how everyone feels welcome at the organization. With dignity, I think of the experiences of clients who undergo rehabilitative therapy elsewhere, but also train on their own and with the help of Fundashon Alton Paas. Going to the AP Center every week feels like training at a gym with all the positive vibes this brings with it, just like everyone who exercises an does sports.
Thinking in terms of solutions goes without saying at Fundashon Alton Paas. Something I never really thought about is that people who are in a wheelchair or who have difficulty walking also want to go to parties, church services or family gatherings. But getting there is not always easy. Fortunately, Fundashon Alton Paas offers Wheelee, a special transport service, picking up people with mobile disabilities safely from their home to their destination and vice versa. That something so simple - a modified car and an experienced driver - can have such a positive impact is really something to reflect upon. Perseverance is a characteristic that applies to all those connected with the organization. I see it in the clients who give it their all when training to attain progress, the trainers and volunteers who do all they can to reach the objectives of Fundashon Alton Paas, the donors and sponsors who every year again and again make the effort to safeguard the muchneeded continuity of the organization and not to mention, in Alton Paas himself. I’ve gotten to know Alton these last couple of years as a tireless go-getter with goals in mind, which he works towards relentlessly together with many volunteers.
Which brings me to the last characteristic: vision. I have seldom – if ever – encountered an inspiring visionary such as Alton Paas. Together with the people surrounding him, he is capable of great things. Things for which funds are needed of course. This is something you can help with. The stories in this publication will explain the reason why.
Susanne van Sambeeck
Editor in Chief LaVida Curaçao
Impact of the Covid-19 pandemic in 2020 2020 has been a year that has challenged the whole world in many ways. With the corona virus and all the things that came with it, it made a huge impact in our organization. As everyone experienced the pandemic a different way, we felt it was appropriate to share our experiences related to covid and the pandemic.
Postpone activities and temporarily closing our facility
Due to the pandemic we had to close our facility, postpone our 4th Caribbean congress and our end of year celebration. We have also experienced a setback in our income and our activities. It can be seen in our facts and figures.
The first lockdown
On March 17, 2020, we decided to close our facility immediately due to the coronavirus. Our clients and trainers did not want to take the risk. We had to close our doors for 2,5 months, until the end of May 2020. Luckily, that month we got the approval from the Department of Epidemiology to reopen our facility, as it is particularly important for our clients to be active to maintain their health. The overall reactions were great. The whole group was coming back with lots of enthusiasm! However, then the second wave came. And again, to be safe and feel safe, a fair part of our clients decided to stay home. At the end of December 2020, we had no more than 20 people visiting the facility to exercise. 6
Lesson learned in 2020 One of the most important lessons of 2020 related to covid pandemic for us was the feedback from our clients regarding the negative effect of stopping the exercises. Of course, we tried to help and provided some custom-made fitness videos to do at home with the help of Ruth Kroes, our fitness instructor of Pump on Wheels. When we reopened, we did a survey with some of the clients. They all confirmed that it was difficult for them to exercise or in other ways stay active at home. The clients experienced a setback with their flexibility and overall wellbeing. This confirms the conclusions of all the international studies we have read about. To prevent medical complications and stay fit, regular exercising is essential for our clients.
Chairman and founder Fundashon Alton Paas 7
Remembering the late Rudy Wijngaarde Fundashon Alton Paas lost a good friend and a great person in August of 2020 by the name of Rudy Wijngaarde. Rudy worked for Reda Sosial as a policy advisor, and it was in this line of work that the board of Fundashon Alton Paas had the honor to meet Rudy. We first met in 2014 when our foundation was organizing the first spinal injury congress in Curacao. We maintained a great work relationship and friendship.
Rudy visited the AP Center on August 2, 2019, and immensely supported the work being done. Regretfully, we didn’t have any more contact with Rudy following his visit. One year later, we received the sad news that he passed away, having lost the battle he had been fighting. Rudy was a person who was always there to lend a helping hand. He came up with ideas and advice that showed he cared about you as a person and that he was interested in your project.
A kind person, always correct and with great respect for everyone. Someone once said something truly remarkable and accurate about Rudy, and we quote: ‘Rudy is a person that enters your mind and never leaves’. Rudy was a great fan of the Dutch soccer team Ajax, and he was also a spiritual person. His faith was important to him. We will forever keep Rudy in our minds and hearts, remembering his passion for his work, colleagues and everyone that he touched in his life. 9
Facts & FIGURES AP Center Client count Year Jan
2018 2019 2020
Mar Apr May
Wheelee Trips Year Jan
Mar Apr May
* Covid-19 lockdown 10
More mobility and more self confidence When Rashon enters the building, he really makes an entrance. He is a spirited youngster with a radiant smile. The 11-year-old Rashon has been training twice a week at the AP Center since he was nine years old, with the guidance of Michel Jourdain, one of the Neuro Ex Certified Activity-Based trainers of Fundashon Alton Paas. ‘Michel is my favorite trainer’, Rashon laughs. ‘He tells me what to do and encourages me to keep going. The exercises are fun but can also be tough. Because I need to put in the effort and sometimes it hurts.’
Able to be independent
Rashon was born premature after a 26-week gestation and has cerebral palsy, a motor function disorder caused by brain damage. It is more difficult to move because signals have trouble reaching the brain. Rashon’s mother believes it is extremely important that he develops himself to become as independent as possible within his capabilities. ‘I won’t be here forever’, that’s how she explains it to
Rashon. ‘And even though Rashon has one more brother, it is good for him to learn to take care of himself as much as possible.’
And that is going pretty well. The activitybased training at the AP Center has already helped Rashon learn how to get up on his own, so that now he can bathe himself and brush his teeth. ‘He rarely uses his walker around the house anymore and he keeps getting faster and faster’, his mother smiles. ‘He is extremely motivated to walk in the house on his own. He definitely acquired his enthusiasm and strength from attending the center.’ 13
Like a gym ‘Fitness is my best friend’, states Rashon. ‘I can stand up better and for longer periods than before. It helps me to keep going, even though it can be tough sometimes. I also get physiotherapy at Fundashon Verriet, but it is just not the same. For me, the exercises I do at the AP Center feel more like going to the gym. There are people around me who are training just as hard as I am, and I have my own personal trainer.’
Rashon is not only making strides physically, the activity-based trainings benefits him emotionally as well, according to Rashon’s mother. ‘The exercises help him in all aspects of his daily life. Rashon has undoubtedly gained more self-confidence by looking around him and realizing that there are more people - including adults - that have mobility difficulties. This knowledge has empowered him. He is less susceptible to bullying because he has seen with his own eyes that becoming paralyzed or having difficulty moving is something that can happen to anyone. Either because of an illness or an accident, for example. It doesn’t have to be something you are born with, such as is the case with Rashon. This insight has changed the way he perceives his situation in a positive way.’
‘Rashon also demonstrates his superpower at school. Every day he makes the climb from the car to the building on his own.’
Most liked post on IG
Collaboration between Fundashon Alton Paas, revalidatiecentrum Curacao, Umente & Government of the ‘BES-Eilanden’ to organize a neuro inclusion summit for the Caribbean.
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Most shared video on Facebook
Testimony of Luti Vrutaal on how he’s progressed by exercising at the AP Center.
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New Program at AP Center
Guided exercise program for clients suffering from a paralysis to exercise independently.
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Facts & FIGURES
‘AVBZ is a right, not a courtesy’
According to the 2017 research by the Public Health Institute, nine percent of the Curaçao community has a mobility impairment. The rehabilitation of this group of people is financed by the health insurance. But after the rehabilitation process is finished they still need help to be able to, as much as possible, create and maintain an independent lifestyle.
SECTOR DIRECTOR SOAW
Take control Victor Monk is sector director at the Ministry of Social Development, Labor and Wellbeing. ‘We feel that people with a disability need to be able to take control of their situation. To do that, they need to obtain adequate support and aid.
We believed in Fundashon Alton Paas from the very start. The organization conducts a professional and sustainable operation. They continue where rehabilitation ends. And that is extremely important, because having a mobility impairment is a chronic condition that you will have to deal with your entire life.'
Carrying on after rehabilitation ‘You can’t plan aftercare following rehabilitation, not financially nor in terms of results. The improvements experienced by those following programs at the AP Center, vary per person. The health insurance covers rehabilitation, but then you still have a long and difficult journey ahead of you. The treatment for this group of patients is never completely finalized.’
On the road to continuity ‘Fundashon Alton Paas is the only institute in the entire Caribbean sector that actively works with training programs aimed at people with a neurological condition or a spinal cord injury. And with proven success. That is why we support the people that make use of the institute’s services in the form of a yearly subsidy. Granting of this subsidy is a temporary solution to fill the gap while working on continuity. We want to give Fundashon Alton Paas an impulse to ultimately reach the point where the foundation obtains funds directly from the AVBZ. Which is a logical step if you look at it from the principle that everyone with a disability has the right to obtain care.’
‘The projects and services that Fundashon Alton Paas offers to this group of people is extremely valuable. The government should support professional initiatives such as these. Ultimately, we are talking about lifelong uninsurable risks that will be carried by the community.’ 17
I help people leave their house It is not easy for people with a mobility impairment to just go to a store, church or a party. Thankfully, Fundashon Alton Paas does understand the challenge. With their Wheelee service, they offer the possibility to go out to wherever the client wants to go. ‘It’s kind of a taxi service, but with a specialized vehicle designed to safely transport people in a wheelchair’, explains Wheelee driver, Shurvently Legito. ‘The clients that I take from A to B, want to do things and attend activities just like everyone else. They already go out a lot less than you or me as it is. They might be in a wheelchair, but they also have family and friends that they want to visit or pursue hobbies and other interests outside of the house.’
Transportation is simply necessary The 23-year-old Shurvently is one of the drivers of Wheelee project for five years now. ‘I had a cousin who was a driver at the Wit Gele Kruis, so from a young age I realized that people with a disability need transportation to be able to leave the premises. I love to drive cars and enjoy being on the road. That is why I love my job. Working an office job just isn’t for me.’ 19
Feels at home Shurvently feels completely at home at Fundashon Alton Paas. Besides being a driver, he is also the team’s handyman. ‘I assemble machines as well and do a little bit of everything. It’s all part of my job and I enjoy the diversity.’
Skillfully and safely
Driving safely is extremely important to Shurvently. ‘I’m an excellent driver, because I’m always on the road for work and besides that, my hobby happens to be motorcycling. I love doing tricks on my motorcycle. Now and then people even ask me to give ‘fever’ demonstrations. You need to be very skillful to do these tricks, which in turn comes in handy for my job as a Wheelee driver. That's because the clients I pick up for transportation sometimes live in extremely hard to reach places. Neighborhoods where there are no delineated roads, or difficult to reach properties where I need to try to get as close to the house as possible. It’s a challenge every time, but I always manage to do it.’
‘It is a real challenge sometimes to get the car as close as possible to the house.’
‘I enjoy driving people around and chatting a bit with them. It’s important for the clients to feel comfortable with me. It also doesn’t matter to me whether it’s late at night, a holiday or whatever. I’m aware that these clients get to leave the house because of the work that I do. That makes me feel good.' 20
World SCI Day
Short educational video on world Spinal Cord Injury day about wheelchair hygiene to prevent risk of Covid-19
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6-hour national broadcast to celebrate international day for people with a disability.
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Caribbean SCI Network
Update on our progress to start a Caribbean SCI Network.
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CERTIFIED ACTIVITYBASED TRAINER
Stimulate muscles to achieve results As a general practitioner, Valentina Londoño is the first and only certified activity-based trainer in the Caribbean territory. In this part of the world, only the USA has general practitioners that have acquired the same achievement. Valentina helps clients in the AP Center to reach their self-established goals so that they are able to do more after rehabilitation. ‘A goal could be, that a client who suffered a stroke, wants to be able to get up unaided after a fall’, explains Valentina. ‘I have a case where we teach the person to get up unassisted, even if it might take a while. The client wanted to be able to take action if she were to stumble while at home by herself. She was fed up with having to wait for hours until someone found her.'
'A goal can also be something almost impossible to notice, but still mean a world of difference to the client. For example, exercises that help prevent bedsores or exercises that help a client feel when it’s time to use the restroom. There are quite a few examples where you can see that after a few sessions they no longer need medications for these issues.’ 23
Intensive training ‘The activity-based training takes it a step further than just physical improvement’, Valentina observes. ‘It is a totally different approach from rehabilitation. We try to stimulate the muscles to take over certain tasks. We notice that this is truly possible with intensive training. Being the trainer, you are the extension of your client’s muscles. We really see a difference by activating them. I must add that all our clients, without exceptions, are truly motivated to improve. Improvement also helps the emotional state. In that regard, the trainings are also of great psychological value.'
‘In this respect, the group projects within the AP Center are also particularly important. The results are not the same for everyone, not everyone makes equal progress. But training together and working in a group enables the clients to support each other and allows them to see from one another that with perseverance and motivation you can ultimately reach a goal - big or small.’
‘With activity-based training, we stimulate the nervous system by focusing on muscles and movements. This approach is still new and pretty much unheard of in the Caribbean. The trainers are taught by specialists from the USA.'
'The results are astonishing, but regretfully most people still believe that if you end up in a wheelchair with a spinal cord injury for example, there is not much that can be done. Activity-based training most certainly is effective. We know that by doing exercises there is room for improvement. We see it happening at the AP Center every day.'
Everyone can end up in a wheelchair ‘Regretfully, people with a physical disability are a forgotten group in our society. People are afraid to get cancer or a heart attack, which is why a lot of money is donated for research and treatment of these diseases. People relate much less to physical disabilities. Which is astounding, because anyone can end up in a wheelchair unexpectedly as a result of an accident or illness.'
Event at Sambil to show the different physical improvements after a 6 months intensive exercise program.
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The annual fitness challenge
The biggest annual fundraising to promote inclusion and raise funds for projects of 2020.
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‘You can’t circumvent Alton Paas. He truly knows how to connect people.’
MIGDARYS mercera Fundashon Alton Paas has been receiving a yearly donation from MCB since 2013. Migdarys Mercera is the foundation’s contact person at MCB. She explains why Fundashon Alton Paas can count on the continuous evaluation for support of MCB.
COMMUNITY RELATIONS MCB
His perseverance is beyond compare ‘In my contacts with other institutions and charities, I’ve seldom encountered someone with the same perseverance and resilience as Alton Paas’, Migdarys Mercera explains. ‘His strength and determination are unprecedented. Always with a sincere smile, even when he faces a setback. I find our cooperation with Fundashon Alton Paas to be very positive.’
Corporate Social Responsibility
‘At MCB, we get numerous requests for sponsorships or donations. For each project, we look at the objectives, how things are handled and who the projects are aimed at. We never ask for a tradeoff in exchange for our donations and volunteer work. Our department is not linked to the bank’s marketing department. We look at the sustainability of the projects, education, motivation and entrepreneurship. Fundashon Alton Paas has all of the above, which explains why we have been working together for this long.’
A world of difference
‘At Fundashon Alton Paas they look at every person’s unique situation and what can be improved in it. They request major motivation and determination from the
participants. The therapies can make a world of difference. The projects help people improve in small steps, but they come with lifelong advantages.’
‘I don’t see my job as work, but as something that I need to do. It’s a rewarding function within the bank where, together with two colleagues, we assess petitions that will help society. We are entrusted with funds to give to people and organizations that engage in charitable causes. I consider the work to be done as a huge responsibility.’
‘In the Curaçao community we have the government, the private sector and the individuals. These parties should work together to support and help institutions such as Fundashon Alton Paas. They do incredibly good work. We have great trust in the foundation. They have proven themselves time and time again during the last few years. If you can give something – as a company or as an individual - do it! Because you never know what might happen to you. Being thankful for what you have and helping wherever you can, is my motto. I hope it is yours too!' 27
Expenses* WHEELEE TRANPSPORT
AP TRAINING CENTRUM
Revenue* 200000 150000 100000 50000 0
SUBSIDIES & DONATIONS
*All amounts are in NAf. 28
AP TRAINING CENTRUM
Revenue vs. Expenses
Facts & FIGURES
MOTHER OF JAYTHRO DEVERS
Jaythro believes in himself and takes on every challenge Milley Devers is the mother of the 22-year-old Jaythro Devers, client of the AP Center, and usually is at the center in Colon a couple of times a week. Jaythro was nine when he was hit by a car while riding his bike. His prospects were not promising. His chance of recovery was minimal. But Jaythro’s mother had faith that her son would recover. She prayed to God to keep her son alive. The road to recovery was long and difficult. After being in a coma for five months, a lengthy rehabilitation trajectory ensued. During all that time, Milley never left his son’s side. She spoke, sang, red the bible and prayed to Jaythro the entire day while he was in a coma. She did a specific therapy by talking to him about the things he liked and tried to bring him back from his present situation to the future, out of his coma.
‘It was tough, I still had a family at home, but I kept pushing with God’s help and the support of my husband and my family. We know God can make miracles happen. We prayed a lot for one.’
Even though the physicians didn’t have much hope, Milley and Jaythro continued the battle. And with success. 31
‘A disability is not always something you are born with. Anyone can have an accident.’
He slowly started improving with small steps. His prospects seemed to point towards a future in an institution, but that was out of the question for Milley. 'I wanted Jaythro at home.' And ultimately, that’s exactly what happened. Milley underwent a special training to help guide and stimulate him with his further rehabilitation. ‘He improved a little every day. When we had our next appointment at the rehabilitation center, they couldn’t believe their eyes.’
Guidance in school
Jaythro attended a special school for a while, but he didn’t feel at home there. ‘He wasn’t being challenged enough intellectually at the school and he decided he wanted to attend a regular school. Jaythro finally managed to get into a regular school. He attended classes there for four years. His mother had to be with him every day. ‘That was tough too, but worth it’, according to Milley.
Rehabilitation, speech therapy and ergotherapy became the common thread in the life of Jaythro and his mother. ‘But at a certain point that also comes to an end. And then – if you don’t want to give up – you must find your own way. At first, we continued working with a therapist we had to pay ourselves. But soon thereafter Jaythro 32
found a video about the AP Center which got him extremely excited. 'That’s where I want to go', he said. No sooner said than done.
Jaythro started an activity-based group trajectory. After it was concluded six months later, he continued training at the AP Center three times per week. Besides the fact that Jaythro considers it a sport – and therefore, leisure – it has done him physically well. His breathing is more relaxed, and he can use his arm better. ‘The accident affected a section of Jaythro’s brain, and as a result he can’t always control his muscles. His training at the AP Center is helping physically as well as mentally. The results are good.'
Being a mother, what does the AP Center means to you?
‘I was very attentive during all those years. Arranging everything, in all aspects, as Jaythro needed. Either, at the hospital, during rehabilitation and in school. It took some time in getting comfortable to leave him alone at the beginning. It was difficult to leave my son in the hands of the trainers at the AP Center, without knowing what was going on . But after a while, I stopped worrying. I am more relaxed, and I can now enjoy the time for myself while Jaythro trains and enjoys himself.’
Fundashon Alton Paas Un futuro sin limitashon
This Impact Report 2020 has been created with the help of Inge van Altena Evert-Jan Boon Susanne van Sambeeck Tamara Neuman
Inge van Altena Photography ejpeg.design LaVida Curaçao English translation
A special thanks to Bario Hotel, Otrobanda. Their hospitality is greatly appreciated. ©Fundashon Alton Paas, June 2021