Adoption Timing Affects APD Waiting List Priority
Denise Beeman Sasiain knew from the moment she held three-month old Xavier in her arms that she wanted to adopt him. Just a month prior, in March 2011, Xavier had been flown by Life Flight helicopter to Miami Children’s Hospital with a skull fracture, subdural hematoma, rib fractures, human bite wounds and nail scratches all over his body. He was also blind due to the severity of his brain injury, and physicians believed there was a good chance he would never see, walk or talk.
As a medical foster parent, Denise had received specialized training to be able to handle the medical needs of children like Xavier in her home. She and her husband, Pierre, were already fostering and in the process of adopting a little girl named Isabella from Florida’s foster care system.
“Every developmental milestone for Xavier has been a challenge,” she said. “But despite everything, his strength to overcome obstacles has been simply amazing.”
A Super Power to Overcome Anything
Xavier’s ability to overcome obstacles was so remarkable, in fact, that the Sasiain family nicknamed him “X-Man” after the superhero films based on the Marvel Comic Books. By age two, X-Man had regained most of his sight and also started talking and walking, but Denise noticed a distinct change in his behavior.
The smiling, happy child had stopped making eye contact. Suddenly, the few words that he had learned like mama, dada, and milk, were rarely spoken. As a baby, he would crawl around to greet and smile with all in a room, but as a toddler, he lost his ability to socialize. In November 2013, at almost three years of age, Xavier was diagnosed with autism.
“I was heartbroken,” Sasiain recalled. “He had already overcome so much, and now he had one more challenge piled on top of him.”
Advised to Postpone Adoption
Even more heartbreaking, a friend familiar with Florida’s foster care system advised Denise to postpone adopting Xavier until he was accepted on the Agency for Persons with Disabilities (APD) waiting list for therapeutic services.
“By postponing his adoption until he got placed on the APD waiting list, Xavier was able to receive therapeutic interventions for his autism almost immediately,” she explained. “It also eliminated an enormous amount of red tape with authorizations and refusals for services by the managed care programs.”
A 2013 law change gave priority to children on the APD waiting list who were being adopted or reunified with their families. However, there are a few catches. The change was not retroactive to all the adopted children already on the list prior to when the law changed. In addition, children adopted from the foster care system are not given priority on the APD waiting list if they are adopted before their developmental disability is discovered.
The Agency for Persons with Disabilities (APD) is a state agency separate from the Department of Children and Families, specifically tasked with serving the needs of individuals with autism, cerebral palsy, down syndrome, spina bifida and more. Currently, there are over 22,000 individuals on Florida’s waiting list to receive medically necessary support services through the APD Home and Community-Based Services Medicaid Waiver.
Governor Rick Scott added $8 million in his 2015 proposed budget to “enroll all individuals with critical needs” on the APD waiting list. Despite this, some estimates say the increase will expand services to less than 1,000 of the 22,000 on the waiting list.
A Step in the Right Direction
“The funding increase is definitely a step in the right direction,” noted Sasiain. “But the majority of those waiting for APD services will still remain without services. And they can ill afford to do so.”
Roy Miller, president of The Children’s Campaign, agrees with Sasiain that the timing of early interventions for developmental disabilities is critical.
“The window of opportunity for these interventions to have the most impact closes more with each passing day,” explained Miller. “As we travel around the state, Florida citizens say they would like to see more of these children taken off the APD waiting list.”
“Without the extra support from APD, Xavier wouldn’t be doing as well as he is, and we never would have had the emotional or physical capacity to adopt Jacob, our now 1 year old,” noted Sasiain. “Since services continue through adulthood, we have peace of mind for Xavier’s future, knowing that as his needs change, services can change as well.”
Denise always knew from young age that she wanted a large family of her own someday, including at least one adopted child. Today, by adopting four children (Isabella, Daniella, Xavier and Jacob) from Florida’s foster care system, Denise has the family she dreamed about as a little girl.
“I just wish that the Governor could see the difference that APD services have made in my family’s life,” she stated. “It’s as if the Governor knocks on my door every day, peeks his head in, and asks what help I need today with Xavier. I am so grateful for this amazing program that encourages adoption and reunification by making children immediately eligible for these services.”
Nevertheless, as grateful as Denise is for ADP services for her family, she also feels some guilt and anger for all those families who remain on the waiting list.
“I have a close friend who adopted her daughter, who was already on the waiting list when she was 4 years old, and now, at 14 years of age, they are still waiting for services. I believe that the families who have taken in these children, they have really taken on society’s burden. We must grandfather in this program to make children immediately eligible if they have been adopted from foster care.”
This Top Story brought to you by Karen Bonsignori and Roy Miller
With online assistance from Tiffany McGlinchey