The ALS Association - ALS Association of Georgia

Care services -the relationship between the care services team and the persons diagnosed with Als (pals) and their family members commence upon diagnosis. The goal of the program is to ensure that individuals and their families experience optimal emotional functioning given the devastation of the disease. Our attempt to successfully impact families can be outlined within our existing programs: education, kostiuk care grant, support groups, ricky p. sweat equipment loaner & assistive technology program, sally panfel in-home care and respite program, paul b. williams Als transportation program, and patient consultations. Individuals who are newly diagnosed often need time to absorb the impact of their diagnosis, therefore basic information and education is provided immediately by Als United of Georgia. This information includes but is not limited to the diagnosis itself, disease trajectory, support and ongoing research. During fye2024, Als United of Georgia saw 169 individuals & their families diagnosed with Als register with the organization. Annually the organization provides an educational symposium which highlights research, support and educational opportunities for people living with Als, community providers, and supporters. Although to date there is no cure for this disease, Als United of Georgia is passionate about the mission of one day finding a treatment and ultimately a cure.the financial hardship that families incur as the result of an Als diagnosis can impact their quality of life tremendously. For those that may need additional help, the kostiuk care grant program strives to provide some relief. This program is a reimbursement program that assists families with expenses that are not traditionally covered by private insurances, medicaid or medicare. It will cover expenses related to home care assistance (respite), travel costs for attendance to and from the Als clinics, home modifications, auto modifications and communication devices. Recipients may apply for and receive up two grants per year in the amount of $1,000 per grant request. Grants are awarded twice a year on a first come first serve basis and will be based on availability of funds. During fye 2024, $217,000 was awarded in kostiuk care grant funds, serving 150 individuals. The support group program provides persons with Als and their families the opportunity to connect with others in the community who share similar challenges and needs. The groups are designed to provide emotional and psychosocial support as well as resources and education. Knowing what questions to ask and where to look for resources is vital. The organization currently conducts monthly support groups that meet the needs of 159 counties in the state of Georgia. These groups are facilitated by professionals and community partners to ensure maximum results. Because the needs of caregivers and children can be very sensitive, the organizationhas developed specific groups to address those needs. During fye2024, 74 support groups were held over 9 locations throughout the state, impacting 858 individuals who participated & attended.as the disease progresses, individuals will experience a decline in functioning as it relates to mobility and speech. These challenges can impact independence and quality of life. In some situations, specific medical and communication devices are required but not covered by private insurance, medicaid or medicare. The equipment loaner program provides such equipment to people with Als at no cost. This program works diligently to obtain, through grant funding or private donations, such items that can ensure increased independence. Als United of Georgia, in partnership with community providers, collaborate on the maintenance and storage of all equipment.90% of the current Als community in Georgia continues to remain in their home throughout the disease process. This becomes increasingly difficult because they will require total adl care from additional providers. This service is not covered by medicare or private insurance companies. The sally panfel in-home care and respite program provides pals with up to 18 hours of in-home care per week. The care is provided by licensed community partners of the Als United of Georgia and eligibility is based on a needs assessment. During fye 2024, 12,777 in-home care hours were provided through this program.access to quality care and research can be challenging for those impacted by Als. As mobility declines and the need for assistive technology increases, people with Als find it difficult to attend needed appointments via traditional modes of transportation. Medicare and medicaid are very limited regarding the coverage of non-emergency transportation. The paul b. williams Als transportation program is focused on addressing transportation needs via: non-emergency transportation, van rentals, vehicle modification and vouchers. During fye 2024, 126 transportation trips were provided and 37 van rentals were provided to families through this program.information is vital to people with Als. As the body declines it is very important to be presented with realistic expectations regarding the disease trajectory. Skilled care service coordinators are available to provide ongoing consultations through our care services consultation program. The ongoing consultations provide the opportunity to assess, educate and empower individuals and their families to make informed decisions. The coordinators are also very instrumental in identifying and making community referrals. Als United of Georgia is the connection between what is needed and what is available for people with Als, their families, and caregivers. In fye2024, the care services coordinator team served 592 individuals living with Als and their families.