A Georgia child with spinal muscular atrophy (SMA) who has full Medicaid can receive skilled nursing, personal support or both at home through GAPP, the Georgia Pediatric Program, when the care is medically necessary. The review looks at the care your child needs every day, such as breathing support, feeding and moving, not at the diagnosis. A parent who lives with the child can be paid for approved personal support hours, and a licensed nurse provides the nursing.
SMA affects every child differently, and a child’s needs can change over time. This page explains how GAPP looks at a child with SMA, how the care is staffed, where a paid parent fits, and what to plan before your child turns 21.
How GAPP looks at a child with SMA
GAPP does not approve care by diagnosis. It approves care that is medically necessary, judged on your child’s overall medical condition, the equipment they use and the level and frequency of care they need (GAPP manual §702.1.1). The state’s nursing evaluation form, the DMA-6(A), asks the physician about the needs that often come with SMA:
- Breathing: CPAP or BiPAP, a home ventilator, a trach, oxygen, suctioning, nebulizer treatments, chest physical therapy and pulse oximetry.
- Feeding: tube feeding and medications given through the tube.
- Mobility: splints, or a child over 18 months who cannot walk and uses a wheelchair.
- Therapy and appointments: how often your child has therapy visits and medical appointments.
The strongest application describes the care in practice: what breathing support your child uses and when, especially at night, how feeds are given, and how your child is moved and positioned. The physician’s orders and statement of medical necessity should carry that detail. Our pages on ventilator care, trach care and feeding tubes go further on each.
Nursing and personal support
- Skilled nursing is the care in your child’s physician’s orders that needs a licensed nurse, such as respiratory care, suctioning or medications, depending on the orders.
- Personal support is hands-on help with feeding, bathing, dressing, hygiene, meals, help with moving and walking, and light housekeeping around your child’s space (§604.2). Personal support staff are trained in transfers, exercises and the use of adaptive aids and equipment (§909.3).
A child can be approved for personal support without skilled nursing (§601). Which tasks belong to which service follows the physician’s orders and the plan of care.
Staffing and backup
Respiratory care needs nurses with the right experience, and every shift matters. Every GAPP agency must have provisions for back-up staffing coverage (§609.4). If no single agency can staff all of your child’s nursing, the skilled nursing hours can be shared between two GAPP agencies under one set of physician’s orders (§823).
How hours are decided
- Hours are based on your child’s specific medical treatment needs and on the training needs of the primary caregiver (§702.1.4).
- They are approved as a monthly maximum for up to six months at a time, then renewed. The renewal is due 30 days before the approval ends (§819.4, §804.2, §817).
- There is no published number of hours for SMA. Anyone who quotes one before the state’s review is guessing.
If hours are denied or cut, federal law requires Medicaid to provide the private nursing a child needs, which a 2026 court ruling about a Georgia child reinforced. Our page on who pays for private duty nursing explains it.
When needs change
New breathing support, a new feeding plan, surgery or a hospital stay can all change the care your child needs. A change in condition goes to the state as a change request within five days, and the review team expedites these when necessary (§827). Hospital stays must be reported too (§818.11). An increase in hours needs documentation from the physician and updated orders.
Can a parent be paid?
Through GAPP’s Family Caregiver Option, a parent or other legally responsible adult who lives with the child can be paid for approved personal support hours, as an employee of the agency. It does not cover skilled nursing, and foster parents are not eligible (§604.2, §604.3). Our step-by-step guide covers the process, and Village Care is how ARZN supports families who qualify.
School
GAPP hours cannot be used at school. Care during the school day is arranged through the school, usually through your child’s IEP (§604, §703.2.3).
Planning for 21
GAPP ends on the 21st birthday. Georgia’s Independent Care Waiver Program (ICWP) serves a limited number of adults who apply between the ages of 21 and 64 with severe physical disabilities, at a nursing facility or hospital level of care (Georgia Medicaid). Before your child turns 21, the state assesses whether they meet its criteria. Start planning six months to a year ahead; our GAPP guide explains what happens at 21.
If your income is too high for Medicaid
Katie Beckett, also called TEFRA, can give a child 18 and under Georgia Medicaid without counting the parents’ income, based on the level of care the child needs. Once your child has Medicaid, GAPP is requested as usual. See our Katie Beckett guide.
What to ask an agency
- How many of your nurses in my county have cared for a child on BiPAP or a ventilator at home?
- What is your backup plan when my child’s nurse calls out at night?
- Will you share hours with another agency if you can staff only part of them?
- Do you hire parents through the Family Caregiver Option for personal support?
In short
- GAPP looks at your child’s breathing, feeding and mobility needs, not the diagnosis of SMA.
- Ask about respiratory-experienced nurses in your county and the backup plan before you choose an agency.
- A parent can be paid for approved personal support, never for nursing.
- Plan for ICWP well before your child turns 21.
If your child has SMA and needs care at home, tell us about your child and we will tell you honestly whether we can staff the care in your county. The full program rules are in our GAPP guide.
Common questions
Can a child with SMA get nursing at home in Georgia?
Yes, if the child has full Georgia Medicaid and GAPP approves care as medically necessary. Breathing support such as BiPAP, a ventilator or a trach, suctioning, tube feeding and mobility needs are among the needs the physician records on the state's nursing evaluation form.
Does SMA qualify a child for GAPP?
GAPP does not approve care by diagnosis. It looks at the child's overall medical condition, the equipment they use, and the level and frequency of care they need, so two children with SMA can be approved for very different hours.
Can a parent be paid to care for a child with SMA in Georgia?
Through GAPP's Family Caregiver Option, a parent or other legally responsible adult who lives with the child can be paid for approved personal support hours, such as bathing, dressing and moving. Care the physician orders as skilled nursing, such as respiratory care, is provided by a licensed nurse.
What happens to home care for SMA at 21?
GAPP ends on the 21st birthday. Georgia's Independent Care Waiver Program (ICWP) serves a limited number of adults who apply between 21 and 64 with severe physical disabilities who need nursing facility or hospital level care, so start planning six months to a year ahead.
Sources
- Georgia Department of Community Health, Part II Policies and Procedures for Georgia Pediatric Program (GAPP) In-Home Nursing, July 1, 2025 edition, published on GAMMIS under Provider Manuals.
- Georgia Department of Community Health, Georgia Pediatric Program (GAPP) provider presentation, June 2023, published on the Georgia Medicaid Management Information System portal.
- Georgia Medicaid, Waiver Programs.
- Georgia Department of Community Health, Community Based Services.
- Georgia Medicaid, Long Term Services and Supports (Independent Care Waiver Program).
- Georgia Medicaid, TEFRA/Katie Beckett.
Please read. This article is general information about a public program, not medical, legal or financial advice, and it is not a decision about your child. Program rules change. Confirm anything that matters with the Georgia Department of Community Health or with a GAPP participating agency before you rely on it.