FOR JONATHAN SAKE OUTREACH
For Jonathan Sake Outreach continues to be a multi-faceted program that exists to help families who have children with special needs in the community to feel empowered to care for, advocate for & raise their children with special needs. Our goal is that they know that they are not alone but have a support system and family within the outreach program and the Miriam Center. We pray that each family will grow in their wisdom & knowledge of the Lord Jesus Christ and have a better understanding of how God loves them and their children. We strive so that each child will receive specialized quality education & medical care to address their unique needs (medical, nutrition, therapy, etc.). Ultimately our goal is that each child will participate in their family and community to their fullest ability. We plan to do this by filling in the gaps where the families need us:
- Physically: nutritional food, therapy, medical care, schooling, etc.
- Spiritually: weekly worshipping during therapy & praying together as a group
and during home visits getting specific prayer requests
- Emotionally: by building a community and support system among other fami-
lies in the same situation.
Currently the ACTIVE outreach are divided into 4 groups (yellow, red, green, and blue). Each color group is further broken down into days of the week. Each day of the week has 8-10 children. The groups are based upon their child’s level of function. Each color group gets 11 weeks of therapy per year. Therapy occurs Monday-Friday from 1:00-3:30. This is a time of learning how to work with their child and provide therapy at home, as well as a time of fellowship with other families in their same situation. At the end of their 11 weeks they receive a customized Home Program in which they are instructed on and given the resources to continue therapy at home with their child. With therapy many of the Children in the outreach program can and do gain new skills and improve in their physical mobility. We strive to provide the best care possible to promote independence and increased quality of life by providing occupational, physical, and speech therapy. Children who graduate out of the ACTIVE Program continue to get a Home Exercise Program for at home to maintain skills. This is updated 2-3x a year at STAND.
********PLAN 2019- Partner with STAND to have a YEAR ROUND PEDIATRIC CLINIC
which will add the component of 1:1 Individualized Therapy for the 140 families. So 3
months after they finish group therapy they will start receiving 11 weeks of 1:1 therapy in the PdP STAND CLINIC. This mean they will get 3 months group therapy at Miri- am Center...3 months Home Exercise Plan...3 months 1:1 therapy PdP STAND CLINIC...3 months Home Exercise Plan... then they will start the rotation over again.
Home visits are important for multiple reasons. First it is a big cultural thing to visit fami- lies at their home and so it a great way to show our love to that family. Since children with disabilities are often considered outcasts and hidden away, when we visit children at their home everyone in the neighborhood is watching and curious. Most often you sit outside the house and so the child is brought out where everyone watches while that child is loved on. It starts changing the way the community looks at that child when they see how much we value and care about this family and their child with special needs. Thirdly because it is a surprise visit it is a chance to see how the child “typically” spends their day. It is a chance to also check on their health as many families wait too long to bring kids to the clinic.
3 MAJOR TYPES
1. Therapy Home visits: This is a time for us to enter into each of the family’s home environment, to hear their stories, to meet their families, and to grow in our relation- ships together. During this time we open God’s word together, share prayer requests and pray together. We also take advantage of this time to check to see what therapy parents are doing at home and how their Home Exercise Therapy Plan is going and then to try to demonstrate 1 or 2 new activities. It is a time to encourage the parents in the importance of doing therapy with their kids daily at home. We also take this time to check and make sure the family is using the equipment daily and appropriately and that the equipment still fits the child.
2. Medical Home visits: This year we have added in Medical home visits using the STAND nurse. The nurse who was hired through STAND is rotating through visiting outreach homes and completing 2 different forms of medical home visits. These med- ical home visits are helping us catch sick kids quicker and prevent hospital visits and even deaths that could be prevented by going to the doctor sooner.
• Surprise Regular Medical Home visits - The goal is to do a surprise home visit every 3 months on all 140 active outreach children. Over the last month Miss Marlee has completed many home visits. She has sent probably half the kids to the doctor catching illnesses sooner. She has found many families not using their child’s equipment because it was broken and referred them to the building clinic to get it fixed, etc. We are already seeing the great benefits these visits are having and we expect will continue to have. And the building relationship as- pect is priceless and so important. During this time she also does a devotional with the family, does some parent education, checks to see if they have any questions about any of their child’s medical care, and makes sure to spend time encouraging the family.
• Post-Clinic, Hospital, or Doctor home visits - This is an area of Medical Out- reach that we were failing in. So when kids come to the mission clinic to see the doctor during week days they often get lab work done and prescriptions filled and are sent home with instructions to follow but maybe they didn’t understand the instructions or the child didn’t get better or got worse but we often didn’t find out till they ended up in the hospital or had suffered for weeks before the families brought them back to the clinic. Same goes with kids who were re- leased from the hospital or private clinic after staying overnight for anywhere from a day to a few weeks or even a month. They left with instructions and medicines to finish but there was no follow up to check on them. So now Miss Marlee does a Post medical follow up visit 1 week after a child either sees the doctor or is released from the hospital/clinic. This visit is to make sure the par- ents understand the instructions, to check and make sure the child is getting better and not staying the same or getting worse. She will be available to answer questions and also be there to provide some encouragement and prayer for the child and family. This home visit also shows the family how much we care about their child and how we want them to thrive and make sure the child is getting better.
3. Post-Funeral Home visits - This is a time to be there for the families and support them through one of the hardest seasons of their life. Saying goodbye to the child that they have loved, advocated for, and sacrificed so much time, energy, resources to care for and love. It is a last chance for us to share the gospel, encourage the family to find Hope in the Lord, and to love on them. This is certainly the hardest type of home visit.
This is a time for the families to have fun with their kids and to build relationships/ friendships with the other outreach families. Each color group of outreach gets 3 activities per year. The activity varies (but typically we choose 1 activity and wait till all 4 groups do that activity and then choose a new activity). Examples of some activities include minute to win it games, going to the beach, movie, BINGO, etc. Each year we also have a Christmas party, Easter party, and outreach graduation which all 140 families are invited to. The community outings provide the opportunity for the parents to build com- munity with 40 other families. We also take time to open God’s word and teach on God’s view on disability which is very different from their cultures view.
Every first Friday of July we have outreach graduation in which we celebrate the children who have gained enough skills to graduate out of ACTIVE outreach into just the STAND follow up program. This past year we had 20 children graduate. We have turned graduation into a time for ALL the families to celebrate not just those graduating. It is a time for each individual parent to reflect back on how the program has helped their child over the last year and praise/thank God for his goodness and provision for this program.
Every first Friday of the month we have Parent Education. This is a time for all the ACTIVE outreach parents and WAITING LIST outreach parents to come together, learn about things that will help them care for their child or family in general, a time of encouragement as we share God’s word and pray together, and a time of fellowship as we share a meal. This aspect of outreach is MANDATORY for all ACTIVE OUTREACH and WAITING LIST outreach parents. We are averaging 90 parents per education. In the past few months we added a new aspect of education a 45 minute medical slot taught by the STAND nurse to address helpful medical topics that she has seen during home visits or hospital visits.
Each child that enters the “ACTIVE” outreach program, as a part of entering the program receives ALMOST free medical Care. They only pay 100gds per visit (less than $2US). This medical care includes: coming to the NWHCM medical clinic to see the doctor, receiving lab work, medicine, and if needed overnight stays at the local hospital. We also facilitate surgeries at the mission when available as well as facilitate trips to other hospitals in Haiti when necessary. We also have a pharmacy where medications are bought in bulk 2-3x a year in PAP so that we can get better prices and thus cut down on the cost of medications for the outreach families.
We also have special Medical Programs the outreach children can quality for including:
1. CRAZY HOPE FOR KIDS Seizure Clinic- we are blessed to have a team from Cincinnati children’s who has dedicated their time, effort and resources into coming 3x a year to evaluate and provide correct seizure medications to our children. There is a long waiting list for the seizure clinic to get on daily seizure meds.
2. Clubfoot casting clinic every Friday morning which is free as well. Children born with clubfeet come and get a series of serial casting done to move the bone in the feet and correct the deformity. They then are placed in a spe- cial brace/boot for the first 6 years of their lives (for a certain # of hours per day). Thankfully up to this point I have been able to get supplies donated to cover the costs of this program. Below indicates the amount we would need in the budget if we had to buy the supplies.
3.Rickets Vitamin Program: where children with Bow Legs or Knock-Knees can come 1x a month and get free Vitamin D and Calcium pills (soon we hope to add a multi-vitamin to this). These 2 vitamins support healthy bone growth. In Haiti we don’t have the technology to determine which children with Bow Legs can be corrected with vitamins versus ones who can’t be. This is why any child that comes to us with Bow Legs we start in this vitamin pro- gram. This vitamin program was started after we had about 40 children with bow legs that we did not know how to help. I hated that there was no way to help. There are few therapy options to help these children outside of surgery later in life but the most effective treatment if it is Rickets is Vitamins (calci- um and Vitamin D). We started the program but families were not being very consistent and it was hard to keep track of who was coming and who was not. Sometimes I would give out vitamins, sometimes the MC nurses, sometimes other therapy staff, etc. Also the families could come any day when they ran out to get vitamins so never knew when they would come. Thankfully Now that we have Nurse Marlee there are 3 specific days per month that the family and child can come and get their vitamins. We have established a strict atten- dance policy since if the child is not taking vitamins daily they will not be effective. We want to help the families who are dedicated and want to fully participate. We hope starting early next year that all of these children will also receive a multivitamin along with their Calcium and Vitamin D. Since bow legs have a lot to do with malnutrition and many of the children we serve with Bow Legs have nutrition deficits we want to be able to help fill this gap in a small way.
4.Regular MULTI-VITAMIN Program - As many of you know children with disabilities often have a difficult time getting needed nutrition. This is even more true in Haiti where resources are limited. We are excited that thanks to STAND’s partnership we were able to start a multi-vitamin program for the 140 active outreach children. We do not have the funding or capability to provide this to everyone. We believe these added vitamins/nutrients will make a difference in the kid’s health. Every month the families will have the chance to receive a months’ worth of vitamins from Nurse Marlee. To receive the vitamins they must come with their child which will get weighed each month. Our hope it by tracking the kids weight we will be able to catch soon- er if a kid starts losing weight. This also ensures we see each kid 1x per month to do a quick check on their health. Since therapy is 10 weeks per year there were months at a time that would go by that we would not see the kids. Where the family picks up vitamins changes based on what month and what other activities the family has scheduled for the outreach program. We were able to ship in 9 months’ worth of multi-vitamins from the states to get the program started but the plan to make this program more sustainable is to start making vitamins from a superfood leaf that grows all over Haiti. Our plan is to make our own nutritional vitamin supplement from Moringa powder. We will only bring the capsules in from the USA. The plan currently is that we will hire a few of the outreach mothers to go out and gather the leaves, dry them and make the powder. Then hire a few other mothers to make the cap- sules (putting the powder into the pill capsules). Moringa powder actually has more nutrients in it than most multi-vitamins. We are excited for this new as- pect of the program. For the chance to provide better nutrition. The ability to track the children’s weight and another chance to improve the quality of care we provide these children and their families.
5.NUTRITIONAL SUPPORT- see section entitled this for more details
6. SURGERY TEAMS- For children that need surgery we coordinate with visiting teams at the mission when it is a surgery that one of those teams can do. When it is not we help locate where in Haiti this type of surgery can be done (majority of the time it is in PAP) and then we help the family access this care. Since PAP is a big city we hire a Haitian that travels with the families, helps them with housing/food/transport, and is with them throughout the whole experience so they are not doing it alone. Some of the surgeries we send kids to PAP for include cleft lip/palate, hydrocephalus, spina bifida, tethered spinal cord. We also help facilitate kids getting MRI and CT scans when it is needed for further diagnosis that will lead to better treatments This type of testing is only available in PAP and are very costly.
7. EMERGENCY MEDICAL/HOSPITAL ADVOCACY - The STAND outreach nurse is basically our Community Health Nurse for the Outreach Program. She is responsible for the care of about 150 ACTIVE outreach children right now. Providing the outreach families the following services A little background on hospitals and private clinics in our area of Haiti. There are 2 hospitals. There is 1 public hospital in PdP about an hour from the mission. Until the last few months the quality of care there was not good at all and it had the reputation that you go there to die. So we did not send children or encourage families to seek help at that hospital. Thankfully there has been some good changes at least in the pediatric ward and so we have been sending some kids there and closely monitoring their care and so far so good and a lot cheaper. The second is a private hospital in La Pointe about 30 minutes from the mission. La pointe hospital is much more expensive and you have to pur- chase each medicine, medical equipment (gloves, needle, syringe, etc.), pay for test, etc. before they will help you. This is a big reason why so many people don’t seek medical care till it’s too late... they wait till they know they have no other option as they can’t afford it and will have to borrow $ from friends and family. Also this hospital and many private clinics around us don’t want to or refuse to treat children with special needs. They think they should be left to die as they are just a burden to the family anyway. They will give them less quality care, not do everything they can to help them, or flat out turn them away. They discouraged parents and families. Over the last few years a few times when they have turned kids away and we have known we will go down and advocate for them and sometimes we get that child help and others times our advocating didn’t matter. We then are able to take the child other places till we find someone who will help. The problem was that many times we didn’t know when families got sent away or the parent were told the child will be fine, just give them this medicine when really they needed inpatient care, and sometimes the child would be kept but given poor quality of care, etc. So having a nurse that parents call when their child is very sick and heading to hospital was a HUGE NEED that we have been failing in the past few years. To this point there were many times that we didn’t even know a kid was in the hospital till a week or 2 later when the family ran out of money and brought the receipts for us to reimburse their child’s stay at the hospital only to realize the hospital had still not run tests to find out diagnosis and was just keeping them for $, or that the child was getting worse and hospital was not giving the best care and the worst was when we got the call a child passed away and later found out they went to the hospital but were turned away or sent home but we didn’t know. So now all the families know if their child is sick and need a hospital or clinic they can call the Medical Emergency phone which Miss Marlee has on her 24/7. They can call and share the problem and the nurse will instruct where to take them. If they are already at a hospital or clinic they let the nurse know so she can come check on them and help advocate for their child. A lot of parents don’t even know how to advocate for their child in the hospital setting...It is intimidating and they don’t know what’s wrong with their child or what treatment they should be getting, etc. This is why it is important to have a nurse who knows what the child needs or should be getting done and if it is not happening is there to advocate for them. The nurse is also there to make sure the hospital is taking good care of the child that they are treating them as they would any other child and not discriminating or giving less quality care because the child is disabled. Another problem is the hospital keeping kids to long to make $ and so the nurse is able to watch and make sure this doesn’t happen to. Or the hospital does not look for the root cause of what is going on and just treats symptoms and thus child doesn’t get better and so the nurse can advocate for the doctors to look for root problem. There have been a few occasions where we have moved the child to a different clinic if they would not getting the care they need.
The nutrition part of outreach, provides a nutritious pack of food that contains 16 meals for the child that can be prepared at home. The Miriam Center nurse and PD decide if a child qualifies for this aspect of outreach. Each child in this program gets one bag of food each week. This food is only provided to the children in outreach that need extra nutrition. This food is also provided to children in the community that are not special needs but are to the point of malnourishment, that if help is not received, developing a special need is highly possible. Each bag of food costs $3.00 US and items to make the food all can be bought at the Haitian Market.
1. 2018 - We started to add a bigger variety of nutritional support. Collected and shipped in a barrel and a half of pediasure 1.5 kcal, duocal, protein powder, and pedialite. The hope is that we will be able provide even more support to some of the most vulnerable outreach. We would also like to add medical mumba to our nutritional tools, but currently don’t have funding to add it.
- Transport Assistance - There is a specific application that families can fill out if they are having difficulty making it to all the outreach events, activity, therapy, etc. The amount given is determined on multiple factors.
- Funeral Assistance - when a child in the program passes away we feel just like we were there for the family when there child was ill we should be with the family and be the hands and feet of Jesus during the hardest of times as well. We financially assist in this area and provide emotional support and encouragement as well.
- General Outreach Blessing - Some ways we have used the blessing fund in the past has been to help families out with rent, help a family to start up a business,
help families with a needed medical testing, help cover cost of funeral when a parent passes away, help with fixing up housing, training, etc. The amount given and what families are awarded it completely depends on urgency, amount of $ available or if we are able to fundraise the $.
Stand has been working alongside the outreach program for the past 3-4 years by faithfully providing therapy teams 3 times a year for 2 weeks at a time. These therapy teams help evaluate new kids and write treatment plans and re-evaluate new kids and update treatment plans and Home Exercise Programs. During stand is when the children's bracing is checked and if to small it is switched out for bigger bracing. During STAND weeks is when majority of equipment is fixed or rebuilt. Without STAND I would not be able to keep programming going for 800 kids. In June of this year they got more involved and invested by hiring a full-time nurse to become the community health nurse for the outreach program. Nurse Marlee has already been making a BIG DIFFERENCE in the medical care of the outreach families. She is running the vitamin programs, advocating for children at the hospitals/clinic and doing 3 types of medical home visits. (See BLOG entitles NEW NURSE). STAND has also taken over the building clinic (see below for details). In the next year STAND is looking to become more heavily involved in the outreach program. They have hired a Rehab Technician to start in January and they plan to have programming year round out of there building. We are excited to see what God has in store.
- THERAPY BUILDING CLINIC- Since equipment is not easy to access in Haiti actually almost impossible... we custom make majority of all the children's equipment. We have had to learn to be very creative and use resources that can be found in Haiti or are easy to have carried in or shipped in. The majority of the equipment that we make is out of PVC pipe, Wood, 5 gallon buckets, ductape, fabric. Stand has provided a space for a building clinic and so starting this year all equipment is fabricated from Pdp. There are some supplies I have to bring from the states including ductape (in country it is over $10 a roll), foam floor tiles, wheels for walkers, waterproof fabric, and pool noodles. Each piece of equipment varies in the price it costs to make but on average each piece ranges from $20-$50. All the equipment is free but when the equipment breaks or becomes to small they are required to bring it back before another piece is made.SPIRITUAL ASPECT OF THE PROGRAMSpiritual development is at the core of this program. It is interwoven into many aspects of the program. Everytime parents come for parent education we start out with worship and a devotion. When families come for community fun activities we also have devotion and worship. During each groups 10 weeks of therapy we have devotions after each therapy session. We also do prayer and devotions during all types of homevisits. We also believe being the hands and feet of Jesus and through our actions also speak louder than words sometimes. The way we love on their children and them as a family I believe also has a strong impact on them spiritually and emotionally.So as you can see the outreach program has become very in depth. Are goal is that it is a holistic program looking at the child and family as a whole. Looking what their GAPS are and where they need assistance to care for their child well and then to step in and help fill those gaps. All families do not receive all the services listed above but the program is pretty individualized. I am overwhelmed by God's goodness when I look back to 9 years ago when the program started and we had only 4 families to today where there are 500. This program has also become a blueprint that is helping other organizations across Haiti start outreach programs. God is so good!Would you Please join me in praying for each family in this program. Pray that God would continue to develop a dedicated and passionate staff to run and lead this program. I am currently praying for a Haitian Leader and an American Leader to step up and want to take ownership of this program. This program really needs 2 people whose complete focus is this program. Currently I am trying to oversee this program alongside everything else I am doing. And PD the Haitian Director of the Miriam Center (MC) is trying to oversee the outreach program alongside the MC which means the program is surviving but not thriving. My prayer is that we get this program to a place where it is thriving.FINANCIAL NEEDSThis growth in this program and the depth of this program also made the budget of this program to significantly grow over the years. It takes around $80,000-90,000 a year to run this program well. It all depends on how many medical emergencies, funerals, surgeries, etc. that are needed. This includes staff salaries. If you divide that out by the 500 families impacted that is only $180 per family per year! So basically for $180 a year we empower a family to keep their special needs child by filling in the gaps where they need us. Now this is an average. Some of the more severe children we spend way more per year and those less severe we may spend way less. So the $180 is an average based on the number of children that receive some type of help from us.If you would like to donate you can do so1. CTEN- www.cten.org/autumnmarshall/2. Paypal- firstname.lastname@example.org