Resource Finder at Kennedy Krieger Institute
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Jim Schuyler had a big decision to make last February. Diane Stegman, one of the Program Coordinators for the Therapeutic Family Care program, wanted to know whether he and his wife, Karen, could manage to care for one more child. That day, caseworkers from the Department of Social Services had removed Dante,* a 2-year-old boy with spina bifida, from a home where his needs could not be met. Could the Schuylers, who already had four biological children and a foster daughter, make room in their house and their hearts for a little boy with complex healthcare needs who desperately needed a safe place to call home?
Jim said yes, and Dante got just what he needed: a loving and stable family environment.
Few things are as essential to a healthy childhood as a safe, stable and nurturing home environment. Unfortunately, for over 500,000 children in the United States, their parents are unable to provide the care they need. Other relatives and social services organizations can sometimes step in, but for children with complex healthcare needs, developmental delays or emotional difficulties, treatment foster care is often the only viable option.
Kennedy Krieger's Therapeutic Family Care program was established nearly 20 years ago to serve children in need of out of home care. The children TFC helps often have a history of, or are at risk for, institutional or hospital placements. Working in partnership with state and local child welfare agencies, TFC matches children with families who can offer them stability, love and attention. TFC also provides specialized training and support to families who join the program.
Choosing to care for someone else's child especially one with a special need is a major, life-altering decision. But for the treatment foster families in Kennedy Krieger's program, the rewards far outweigh the challenges. In fact, many foster parents in the program have ended up adopting the children in their care. Since 1986, 47 children referred to TFC have been adopted, 32 of them by their foster parents.
Says Karen Murphy-Keddell, co-director of the Therapeutic Family Care program, "Although the first goal is to reunify children with their families, when that is not possible, another permanency plan is developed which often becomes adoption. Many foster parents make the decision to pursue adoption because they come to feel that they can't imagine their lives without the child they have grown to love."
Seeing this trend, program directors took the step in 1998 to become a certified adoption agency. "Now that we're a licensed agency, we can help expedite the often lengthy and complicated adoption process," says Paul Brylske, co-director of TFC. "We can begin approving someone as an adoptive parent right from the beginning."
That option wasn't available when the Schuylers first became involved with TFC 14 years ago. In addition to their four biological children, the family has cared for seven foster children. They took a break after their youngest, Joshua, was born with Down syndrome, but returned to the TFC program two years ago and are now caring for toddlers Dante and Cassie, age 2 1/2. Dante's medical history was unclear when he was first placed with the Schuylers, but Adoption Coordinator Stegman helped the family piece together background information, which ensured that appropriate evaluations and therapies were scheduled immediately. Dante has a shunt to drain the fluid off his brain, requires occupational and physical therapy, and uses a nebulizer to control asthma. Cassie, who was diagnosed with Shaken Baby Syndrome, had limited use of her left side when she arrived at the Schuylers'. Cassie still has significant vision impairment, but with occupational, physical and speech-language therapy, she has become increasingly more active and communicative. The Schuylers hope to adopt both children. "We never expected to be in this position at this point in our lives," says Karen. "But, you know, you have your plan, and God has His, and His is usually better."
That's a sentiment the Miller family can certainly echo. At church one Sunday, they came across a flyer promoting the TFC program. At the time, Dale and Larry Miller had two teenaged daughters of their own and had already adopted a healthy toddler named Emmett.
"We really enjoyed our experience with Emmett, and were looking for ways to expand our family," says Dale Miller. Since then, the Millers have adopted 5-year-old Davona, who was exposed to both alcohol and drugs in utero and who had been living in a group home when the Millers brought her home at nine months. They also hope to adopt 2 1/2 year-old Tyrell, a preemie they brought home from the neonatal intensive care unit while he was still on oxygen and a heart monitor. Davona, who could barely sit up at 10 months, was walking by her first birthday. Today, although her prenatal exposure to drugs and alcohol has left her with symptoms resembling attention deficit hyperactivity disorder, she's thriving in a half-day kindergarten program. She also receives speech therapy once a week.
Tyrell's difficulties are more severe. Shortly after birth, he suffered a brain bleed and has significant speech delays. Currently, he's working with a speech therapist and learning some sign language. Because of a sensitive gag reflex and problems with persistent vomiting, he's small for his age, but the Millers are determined to help him achieve a healthy weight even if it requires costly human growth hormone treatments.
Many of the parents involved in TFC attribute the success of their new families to the program's emphasis on support and training. In addition to a broad education on the realities of caring for disabled children, Kennedy Krieger provides specialized training geared toward each child's individual needs. "Every time you meet a new child, you get new training," says Karen Schuyler. "You discuss their medications, the equipment they use, their emotional needs and how to work with the child's parents if they are still in the picture." Since emergencies rarely confine themselves to business hours, the program's clinical social workers are available by pager 24 hours a day.
Many children in TFC receive clinical care through one or more departments and clinics at Kennedy Krieger, and all treatment families have direct access to Kennedy Krieger's team of developmental experts. That relationship is a tremendous resource for new foster or adoptive parents trying to understand a child's diagnoses and needs.
TFC also provides respite care services for treatment foster parents. Lasting a day, weekend or week, these services allow foster families to take a break from the everyday tasks of caring for a child with special needs. While few foster families use respite services frequently, respite care is an invaluable resource in emergency situations.
"We haven't needed it much," says Dale Miller, "but it worked out wonderfully when we did. My mother-in-law had died, and Tyrell was still on oxygen at the time. Another family came out to our house and received training on how to use Tyrell's equipment. They watched him while we attended the funeral."
While children are in foster care, the state medical assistance program pays for their medical coverage. In addition, foster parents are paid a monthly stipend that not only helps cover the costs of food, clothing, toys and other items but also includes a payment for their work as foster parents in the program. Those stipends end when adoptions become final, but many of the children in the Kennedy Krieger program still receive a monthly subsidy from the state based on their disabilities. "Furthermore," says Stegman, "our social workers can help with the subsidy process and can sometimes recommend a one-time resource award to cover something like tutorial services or other supports based on the child's needs."
The process of becoming a foster parent through TFC is thorough. Interested families attend an information meeting, fill out an inquiry form, provide references and take part in an initial interview. Families then complete 24 hours of pre-service training that provides the basic knowledge and skills required of beginning treatment foster care providers. Final approval is granted after families successfully complete all of the licensing requirements, which include health and fire inspections of their home and home visits with a clinical social worker.
Some families make it clear from the start that their attraction to TFC stems from a desire to adopt. Eager to start a family but unable to have children of their own, Linda and Bryon McCauley investigated overseas and private adoptions, but found waiting lists long and costs high. "Those options just aren't realistic for working people, and we'd been trying to have kids for nine years," says Linda. "I discovered the Kennedy Krieger web site, and thought that it must be harder to find good homes for children with special needs."
The McCauleys are now the foster parents of 2 1/2 year-old Edgar, who relies on a feeding tube, and 15-year-old Anna, who is blind and has cerebral palsy and intellectual disabilities. Anna is staying with the McCauleys only for a few months until her grandmother can begin caring for her again, but the McCauleys are in the process of adopting Edgar.
For other families, adoption becomes an unexpected choice when a bond with a foster child grows too strong to break. Home care nurse Lorna Ajala had been deeply moved by a foster family for whom she worked. With her nursing experience, she believed she would make an ideal foster parent for a child with special needs. A friend referred her to Kennedy Krieger's program, which matched her with then 4-year-old William, who has cerebral palsy, learning disabilities and a chronic medical condition. Before long, she says, "William became a part of my family, and I officially adopted him in 2000."
While another of Ms. Ajala's TFC foster children successfully returned to his mother as a result of the team's efforts, Ms. Ajala hopes to adopt Dorie, a 6-month-old girl with prenatal drug exposure for whom she has been caring since February.
The time and energy involved in caring for children with serious emotional and medical needs are great. Adoptive and foster parents of children with special needs become used to routine appointments and consultations with specialists and anything-but-routine visits to the emergency room. "William has a lot of trouble getting around, and making sure he takes the medicine he needs can be stressful, but the biggest issue was working with all the nurses and other specialists he needed to come into the house," says Lorna Ajala. "Everyone's personality is different, and everyone has a different way of doing things. Being a nurse made me more confident going into foster care, but I don't think you're ever really fully prepared."
And there is always the fear of saying goodbye. "We really want to adopt Tyrell, but what if his birth father comes back?" worries Dale Miller. TFC assists in supporting interactions with birth and foster families. When successful, such mediation can help foster parents maintain contact with kids who return to their birth families. Lorna Ajala's former foster son has had several weekend visits with her since going back to live with his mother.
For most, the rewards far outweigh the risks. "Of course we get tired sometimes," says Dale. "We're raising our second family now, when we could have been doing more relaxing things. This is so much more meaningful I wouldn't change a thing."
For the Schuylers, the foster children they've cared for over the years have taught their biological children far more about the importance of accepting and learning to understand the needs of people with disabilities than they could ever have learned elsewhere. "My kids truly understand how important it is to help others, and to treat any person with a disability as if he was their brother," says Jim. In fact, Karen believes that the kids they cared for before their own disabled son Joshua was born helped their older children prepare for having a brother who'd need a little more help than most.
Even though Jim became a stay-at-home dad years ago, he says that without his biological kids he and Karen would never have been able to keep up with the responsibility of caring for children with such complicated needs. "My whole family, including the older kids and Karen's mom, helps us."
But, says Karen, watching their foster kids grow stronger and healthier makes the challenges of raising them easier to face. "People ask us all the time how we do it," she says. "But I'm just so inspired by watching the little steps Dante and Cassie take. Don't ask how we do it ask how they do it."
For more information about Kennedy Krieger's Therapeutic Family Care Program, call 443-923-3800. TFC also extends its support to families outside of the program by offering a support group for anyone who has adopted. If you are interested, call Becky Pearson, Adoptive Parent/Support Group Facilitator at 410-876-2422, ext. 135.