Babies Can’t Wait – Our Experience
While I have taken quite a few blog posts sharing lots of details about our story along this special needs journey, I wanted to focus in for a bit on our experience with Babies Can't Wait, the Early Intervention Program in the state of Georgia. We received both in-home and clinic services through Babies Can't Wait (BCW) in Gwinnett County from 6 months until age 3. This included speech therapy, occupational therapy, and physical therapy. While we had a couple of small setbacks, we had a very positive experience overall.
From what I've read other parents share in online groups, the quality of the program varies widely from county to county within the state. They all have things in common, however. First of all, services received are entirely free to you and paid for by the state. Secondly, they all have a common mission, which is to intervene in the lives of young children before age three. Because the neuroplasticity of the human brain is so much higher in years 0-3, interventional therapies have been shown to be extremely effective in those years especially.
If your child is showing any signs of developmental challenge, your pediatrician would be the one who refers you to BCW. You can also apply directly through the Georgia Department of Public Health. At that point, they send out a licensed social worker to your home to do an initial consultation and evaluation. Based on the data provided by the pediatrician and the social worker, they will send therapists for the area of need into your home to complete an evaluation. If you qualify for services, you'll then begin to have therapies in your home for physical, occupational, and/or speech therapy. It is possible at some point that the therapists may want you to go to another location for therapies, especially for physical therapy. We did some PT in the clinic as well as in the pool (aquatherapy), but the vast majority of our therapies were in our home.
While living in Boston during M's first 6 months of life, we were connected with the Early Intervention Program there, had done an initial evaluation with them, and were just starting to schedule evaluations with specific therapists when we moved back to the Atlanta area. While the EIP folks in Boston shared the information they had with the folks in GA, we basically had to start over with the process. This may have been part of being so early in the steps when we moved, but be aware that moving while involved with the Early Intervention system can have setbacks.
We also had one additional move during our time with Babies Can't Wait that had a bit of a setback. We moved within the same zip code and town, but unfortunately, we didn't realize before we bought our house that we would be moving across geographic team lines. We ended up changing therapists and schedules at the same time as moving, which felt very overwhelming at the time. When our amazing OT, who definitely felt like part of our family after seeing M for over a year, told us she would not be serving M once we moved, I broke down in tears. Our new OT is also amazing, but I wish I had been more prepared for that transition. So, if you are involved with BCW and considering a move, check to see where the geographic lines are for your team so you know what you are signing up for before you make a final decision.
Once we completed our initial evaluation with BCW in Gwinnett, we qualified for speech and feeding therapy twice per week. We didn't qualify for PT and OT services at 6 months because M wasn't far enough behind. When she hit 9 months and I was sure she had a good shot to qualify for OT and PT services because we were quickly adding to the list of milestones missed, I ran into a bit of an issue: the BCW program was understaffed and there were not therapists available to schedule individual evaluations with us. Instead of waiting three more months in the already limited and precious three-year window, I decided to get our own evaluations privately. We used private insurance to (mostly) cover the cost on getting evaluations done for OT and PT through Children's Healthcare of Atlanta. She qualified for once per week on both OT and PT at the time. We had to wait a month or so for a PT time slot to become available, but within a reasonable amount of time we were at four total therapies a week. And I thought that was a LOT at the time!
I'm told that getting all three therapies (OT, PT, & Speech) serviced through Babies Can't Wait is a rarity, but we were about to get even more rare. When M was diagnosed with her genetic disorder at 18 months, we were told the most effective intervention was lots and lots of therapy, to the tune of 10 per week total: three OT, three PT, and four speech per week. Armed with a strongly-worded letter from the amazing Dr. Wendy Chung, the lead researcher behind M's disorder, we made a big ask to BCW. While they didn't get quite up to the level Dr. Chung had indicated, they did increase our services, bringing us to two OT, two PT, and three speech sessions per week. This, I am told, is unheard of in the BCW world to get two or more of each therapy per week. From our experience, being armed with a clear diagnosis and a written opinion from the top expert on M's genetic disorder was the best resource for getting that approved. Since we were also in the process of applying for Medicaid, which would help cover the cost of the therapies, they were less resistant to increasing since it wouldn't all be coming out of the BCW budget.
M continued receiving therapies through Babies Can't Wait until her third birthday at that higher level of seven total therapies per week. We supplemented with a few other appointments including adapted swimming lessons, music therapy, and play therapy through Lekotek. We utilized some grant funds to help pay for those, though some were definitely paid out of our own pocket.
While we were able to increase our services through BCW to a higher level, I am told by some parents that they were not able to get the level of therapies they were looking for. If BCW is not willing or able to provide the number of therapies that your child is being prescribed by their medical team, consider adding therapies each week privately. Babies Can't Wait generally frowns on supplementing with additional therapies privately, but you can choose not to share this information with them. It's your choice and ultimately not their business. You can speak to your individual therapists to see if they would be willing to add sessions with you that are paid through the private avenue instead of through the BCW program. If not, consider supplementing with other therapists or with alternative appointments that will not conflict, such as music therapy, hippotherapy, swimming lessons, sports/dance classes, or music classes.
The variation in quality I have gathered from other parents in different parts of the state generally refer to the availability and quality of Case Managers and/or therapists. We have had an incredibly positive experience on this note. We have had two Case Managers, both who have kept M's interest as front and center even if they had different personal preferences about aspects of the process. We've had seven total therapists through Babies Can't Wait, and only one was not sufficiently helping M progress such that I had to request a change. Some have become more personally attached to M than others; a few have definitely gained a permanent place on 'Team M.' Our speech therapist in particular has seen M consistently since she was six months old, and she has become a welcome part of the family.
We remain amazed by the progress M has made through her tenure in the Babies Can't Wait program. It seems a miraculous feat of magic to look back and see how far she has come with their expert guidance. In physical therapy, she has gone from barely being able to roll over to walking, running, and climbing. She was hardly able to play with toys, and is now drawing, stacking blocks, and stringing large beads. When M started with our SLP at six months, she was still requiring 30 minutes for each bottle, and now she is a fully self-sufficient eater. She has gone from barely babbling at age two to now saying 6-word sentences at age three. They may not be perfectly pronounced, but they are there!
We are incredibly grateful for each person in the BCW program who has invested time, energy, and care into M's journey. We know these early therapies have already had a large impact on her development and will continue to pay dividends for years to come. If Babies Can't Wait or another equivalent Early Intervention Program is available to you, I would encourage you to pursue it and give the program in your area a try. It has the potential to make a huge difference!
Photo by Susan Holt Simpson on Unsplash