111 Pageviews Read Stories
Causes: Birth Defects & Genetic Diseases, Camps, Health, Human Service Organizations, Human Services, Sports
Mission: Focus + fragile kids understands and supports the unique needs of families with children who are medically fragile or have significant developmental or physical disabilities. We offer comfort, hope, and information to parents; accessible recreational and social programs for children and teens; prescribed medical equipment for medically fragile children not covered by insurance or medicaid; and fun, inclusive activities for the entire family. A non-profit founded by parents in 1983, focus continues to embrace and strengthen georgia families.
Programs: Summer camps & children's activities focus + fragile kids offers 11 week-long sessions of highly rated, adapted summer day camp, and more than 350 children attend. Mercer university hosts the traditional outdoor camp in late may, and its physical therapy graduate students assist with the program that features swimming, pottery, and competitive games. In june and july, nine local churches donate space and volunteers for ten indoor camps. Volunteers come from community organizations, such as the national charity league, young men's service league, mercer university physical therapy graduate school, and the chattahoochee tech pt assistant program. In 2017, the campers enjoyed arts, crafts, cooking, science, recreation, and music based on popular children's movie themes with activities adapted for their individual capabilities. In post camp surveys, parents gave a+ ratings for appropriate activities, inclusion of all campers, staff knowledge and attentiveness, cost of camp, and provision of a break for parents from constant childcare. Focus also supervised seven interns (from north georgia, georgia southern, west georgia, berry, two from young harris, and lipscomb (nashville), as they worked in summer camp and hospital visitation programs. Focus' adaptive swim team runs for two (spring and fall) ten-week seasons in eight metro atlanta settings. The team builds skills and self- confidence in swimmers. Swim meets in the spring and fall capped the 2017 season with 100+ athletes in the each session receiving ribbons, t-shirts, and special snacks. Through a saturday childcare program, focus provides a break for parents from their constant caregiving roles. Special educators and registered nurses, aided by volunteers, care for children with developmental or physical challenges and their siblings. In 2017, this monthly program served children in four locations - alpharetta, acworth, chamblee, and peachtree city. Churches donate space and volunteers to serve up to 22 children per session. By survey, parents that utilized the childcare service said it gave them a break from childcare in a convenient and safe environment. They thought the caregivers treated their children with love and respect. They said their children enjoyed playing with other children and being with a music therapist for interactive singing and playing.
parent & family support and information focus + fragile kids serves children and teens who are medically fragile or have physical and/or developmental disabilities; diagnoses include cerebral palsy, down syndrome, autism, mitochondrial disease, rare genetic disorders, and cognitive challenges. Many will require life-long care, from complete assistance for all activities of daily living (feeding, toileting, dressing, bathing) to assistance with grooming, meals, finances, and household safety. Most will never live independently. Because of their constant needs, their parents desperately need support: a shoulder to cry on, information about available resources, and a community that understands and accepts their child, and medical equipment that makes daily life a little easier. Focus + fragile kids coordinates monthly parent support groups in multiple atlanta locations, as well as a group for bereaved focus parents. The trained parent volunteer leaders of these groups guide participants through difficult emotional times, as they network with others. With partner junior league of atlanta, focus invites moms to "focus on moms," an annual day of chocolate, pampering, lunch, and informative workshops; over 100 ladies came in 2017 to two locations. "moms day out" on a 100-foot, 3- level lake lanier houseboat drew 100 mothers registering for rest and renewal. For siblings, focus offered an activity-based support group at each family camp. A trained sibling led the groups, which served a dozen siblings. Four community volunteers are on call to visit focus + fragile kids families when their children are hospitalized at children's healthcare of atlanta at scottish rite and egleston for surgery or illness. Focus + fragile kids also hosts monthly "lunch and listen" groups for parents of children in the ticus and nicus of both hospitals and regularly takes "treat bags" to the beside of those children. Focus sponsors an annual educational conference with speakers from medical and counseling fields to address challenges that families of children with disabilities face daily. In 2017, over 100 people attended the conference in dunwoody. Focus also offers free, smaller workshops several times a month with topics such as medicaid waiver programs, supplemental security income (ssi), guardianship, the individualized educational plan (iep), wills and trusts, and cpr training. With the merger of focus and fragile kids in february 2017 came a re-design of the quarterly newsletter. Now called the viewfinder, it has new branding and full color. It features stories written by parents of children with special needs and reaches over 4,500 families, professionals, and friends. The focus + fragile kids website www. Focus-ga. Org also had a re-design in 2017, making it more readable and appealing to mobile users. Focus + fragile kids is active on social media to interact with parents and friends on facebook at https://www. Facebook. Com/focusfragilekids/ and instagram and twitter at @comforthopefun. Focus + fragile kids posts daily on facebook and includes photos from events. It also hosts a dozen "closed" (not open to the public) facebook pages for parents in support groups, either by location or need, so that they can communicate privately at any time - day or night.
family activities and camps because families who have children with physical or behavioral challenges are often reluctant to participate in community activities, focus + fragile kids sponsors a number of wheelchair accessible, citywide activities each year. In 2017, hundreds of families attended focus day at six flags over georgia, the georgia aquarium, and zoo atlanta. Smaller community events included a barbeque, bowling, chili cook-off, valentine dance, the atlanta symphony, lego-land, movie night, and dance lessons. Focus partners with local churches, the junior league of atlanta, and lego-land to ensure that the families who attend these events have a welcoming and memorable experience tailored to the abilities and needs of their children. "under the sea" was the theme for focus family camps in 2017. One hundred thirty families of children with disabilities came to one of two sessions held at camp twin lakes in rutledge or winder, georgia. The camps included 3-days and 2-nights of wheelchair accessible activities for children and adults, such as swimming, boating, archery, ropes, and a nature trail. A family dance, scavenger hunt, talent show, t-shirts, and craft activities celebrated the sea theme. The weather was too cool for swimming at the second camp, but campers enjoyed a hayride and bonfire with s'mores. While the activities are fun and accessible, the best part of camp is the chance for families to connect with one another in an informal setting. They share and discuss the challenges of living with a child with a disability and gain strength in an understanding and supportive community. In post- camp surveys, parents gave solid "a" ratings to camp activities being fun for their family, the opportunity to meet and be with like families, the chance to engage in adapted outdoor recreational activities, and the cost of camp compared to a weekend away on their own.
grants and loans of medical equipment with the merger of the fragile kids foundation, the organization incorporated the mission of providing prescribed medical equipment to children that medicaid and private insurance will not cover. Many children do not sit or walk independently and need supportive seating or therapeutic strollers with supportive seating. They might also need motorized lifts for growing children to go upstairs (stair lifts), get out of bed and to a wheelchair or the bathroom (ceiling lifts), or get into a van (wheelchair van lifts). A focus + fragile kids medical review committee comprised of physicians, nurses, physical therapists, and social workers, quarterly reviews applications from families that include medical referrals. The committee considers the physical and medical needs of the child, as well as the families' income and resources to approve or deny the application. In 2017, focus + fragile kids paid 193,000 for critical equipment for medically fragile children. A portion of that sum was for permanent grants, such as the installation of electronic wheelchair lifts for vans. The remainder included purchase of equipment, such as feeding chairs or therapeutic strollers, which children will outgrow and return to the "equipment library. " in follow up assessments, most parents rated the provision of the needed equipment as "life-changing" in terms of functionality and mobility. Teen & young adult camps and activities focus + fragile kids organizes a social group comprised of 120 teens and young adults (tyas), many of whom are in wheelchairs. About 30 to 40 tyas meet monthly in the community to bowl, paint pottery, play games, and complete community service projects. The mercer university doctor of physical therapy program partners with focus in tya activities for service learning. Fifty tyas attended focus' 6-day, 5-night outdoor camp held at camp twin lakes in rutledge, ga. All campers achieved goals or made significant progress on goals of working toward independence, exploring new activities and outdoor adventures, and establishing friendships with peers. The octoberfest tya weekend retreat at camp twin lakes' winder location also had 50 participants, a number of whom experienced their first night away from home and family.