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A local Richmond mom knows better than most of us what it’s like to battle the red tape and obstacles involved in obtaining care for a child with mental illness. This local mom – we call Rebecca (her real name is not used to protect her privacy) – suffered through a terrifying night of watching over her daughter when Tucker’s Hospital where she went for help had no beds. Nearly 8 years of navigating the complex healthcare system, several misdiagnoses, and thousands of dollars later, she and her daughter finally found help and a place for appropriate treatment.
But finding help did not come without years of anguish, fear, concern, and hard work. Rebecca was on her own to find the help her daughter needed, and she was left to her own resources. It was an extremely difficult and strenuous time for everyone involved.
We were able to interview Rebecca for her story and this Real Richmond Mom has certainly shouldered more than her share of challenges with the systems of care for children with mental illness. Names have been changed to protect privacy and confidentially, but this story is about the real challenges faced by this family.
Rebecca’s Story
Rebecca and her husband were delighted to raise their daughter and life was good. They enjoyed many fun times together and their daughter was a joy. But something changed one day and it turned their world upside down.
Rebecca’s* daughter Alyssa* was an honor roll student until her freshman year of high school when she began having behavioral problems at school. It was not normal for her daughter to behave so strangely and she wasn’t sure where to turn for help. But Rebecca had no idea about the complex mental health system she was about to encounter. As if having a child with mental illness wasn’t enough to deal with, she quickly learned that the systems established to help her daughter were difficult if not impossible to access and understand.
Rebecca set out on a mission to get a diagnosis for her daughter’s condition, and to get her daughter the treatment she needed. After seeing several doctors, all giving different diagnoses ranging from autism to bi-polar, and major depressive disorder to schizophrenia, Rebecca was exhausted and confused. At one point, her daughter was on eight different medications and each had its own side effects that often required another prescription treatment. And the problems continued to escalate as the financial outlay increased.
During one extremely dangerous and difficult night, Tucker’s Hospital had no beds and they sent Rebecca’s family home with their daughter who was suicidal and homicidal. It was much like the Creigh Deeds situation recently – Rebecca’s daughter was a threat to herself and her family. Rebecca and her husband stayed up all night for Alyssa’s safety and their own safety.
It was a harrowing night.
Rebecca was determined to get the help her daughter needed. She tried endlessly to navigate the mental health system all on her own and spent full days making phone calls and trying to get information about affordable help – or ANY help at that point. Navigating the complex mental health systems and trying to find help consumed her life many days. Rebecca knew that she had to find help for her daughter’s safety and well being – and for her own safety.
“Finding what you need is like a scavenger hunt. The helpful information I did learn was in conversations with others over the years,” Rebecca remembers tearfully.
Fortunately, this situation turned out much better than many others – thanks to Rebecca’s relentless search for help and support. Alyssa is now living in a safe place where she gets the treatment and support she needs. She is 22 years old and was finally properly diagnosed and began full-time treatment at 18 years of age. But a diagnosis and treatment didn’t come easily.
It was only through conversations with others that Rebecca learned about the State’s DD Waiver (Developmentally Delayed) which helps provide services for people who are developmentally delayed. There is typically a 10 year waiting list for help, according to Rebecca. But she is grateful that they have found a place where her daughter will get the treatment she needs and their lives can become more ‘normal’ again.
Rebecca’s story opens our eyes to the difficulties of dealing with this type of situation. And it reminds us of organizations like United Methodist Family Services that are trying to make a difference by helping these families find help and hope.
UMFS Helps Parents of Children with Mental Illness
United Methodist Family Services knows all too well that this situation plays out in families every day. And that’s why they are so focused on helping parents navigate the system to find the help they need when they need it. A recent grant to UMFS will make it possible for them to do even more to help these families struggling for support and answers.
At a time when children with mental illness is top of mind in the Commonwealth of Virginia, UMFS has received a $805,554 grant to help bring systems of care for these children to a national scale in Virginia. The grant was awarded from the Department of Behavioral Health and Developmental Services (DBHDS) and is part of a larger statewide System of Care Expansion Implementation Grant, which was made available by the Substance Abuse and Mental Health Services Administration.
Grant monies will allow UMFS to come up with systems to cut the red-tape and reduce the amount of paperwork and other regulations that parents must endure in order to find the best services for children with mental disabilities ages 12-18. The Systems of Care program will help to provide better access to formal and informal resources, from parenting classes, to psychiatric and educational resources.
According to a recent press release:
Grant monies will allow UMFS to come up with systems to cut the red-tape and reduce the amount of paperwork and other regulations that parents must endure in order to find the best services for children with mental disabilities ages 12-18. The Systems of Care program will help to provide better access to formal and informal resources, from parenting classes, to psychiatric and educational resources.
“We are hyper-focused on providing safety nets for youth with mental disabilities, but also creating ways for their parents to better access care and navigate the system for help,” said Nancy Toscano, Associate VP, Strategy and Programs of United Methodist Family Services. “This can only be done through a team effort and with these organizations on our side, I know we can be successful.
UMFS will manage all funds and track success for programs in the city of Richmond, Colonial Heights, Chesterfield, Henrico, and Goochland. Councilman Parker Angelasto of Richmond City’s 5th District supported UMFS’ grant application.
“This grant will assist in placing a greater emphasis on building natural supports and the use of parent to parent coaching in a regional collaborative system can and should transcend jurisdictional boundaries that have hindered some services to local residents,” said Councilman Agelasto.
UMFS will be working with the National Alliance on Mental Illness (NAMI) and the University of Maryland to build the System of Care support through community education, clinical coaching and training parents of children that have received services for peer parent support. UMFS will have a project coordinator and a project manager on staff along with peer navigators who will work with families by guiding them to available community resources.
Visit www.umfs.org or call804-353-4461 to learn more.
This Real Richmond Mom (and Dad) have suffered through experiences that many of us never dreamed possible. Now, thanks to the grant to UMFS and the focus on navigating these complex systems, many families will find the help they need sooner and easier. For more information or to donate to UMFS, click here.
*Names have been changed
