One of the most significant barriers to accessing mental health treatment for children is cost.
Our Executive Director, Amy C. Sousa, Ph.D., offers direction for community engagement in family economic policy. In her article, “The Cost of Disability Advocacy: Adjusting the Self-Sufficiency Standard for Children with Disabilities,” recently published in the Journal of Children and Poverty.
Dr. Sousa proposes a method for estimating the expenses of meeting children’s basic needs. These include:
- Out-of-pocket expenses;
- Lost wages; and
- Cost of advocacy
Wediko offers intensive mental health services for low-income children and families and provides guidance for reducing financial barriers to treatment.
We asked the Wediko community to share reactions to Dr. Sousa’s article and their own experiences with the cost of mental health treatment. John Hennessy, current Wediko Board of Trustees member, along with Alisa Hunter and Kate Patton Regal, two current Wediko staff, weigh in below.
Head of Business Operations, AstraZeneca
Wediko Board of Trustees Member
My son was diagnosed with Asperger’s Syndrome so I’ve experienced this on a firsthand basis. I can reflect on all the time my wife spent on advocacy alone, and our son’s case was milder than others. His situation wasn’t severe enough to require direct care, but just the additional advocacy through his years in school took a lot of time, which indirectly cost a lot as well. This article gives a thoughtful insight into what so many are experiencing day to day.
The article raises a lot of awareness and makes a strong and solid case on behalf of parents of children with disabilities. The way Amy [Sousa, Ph.D.] points out the challenge of arriving at a method that’s actually effective is very important. With the information she lays out, a clear case is made to continue discussion about factoring in the multiple levels of cost felt by these already struggling families.
Manager, Wediko MassSTART Program
I appreciate Amy’s article highlighting the true cost of raising a child with special needs and the impact on families, policy, and access to resources. It also makes me think of the barriers families face beyond the financial; the barriers that come with the role they must play in advocating for their child and family.
Many families also face emotional and intellectual barriers when seeking support. There’s a lot for a family to understand in order to advocate effectively. Families have to understand their child’s needs and what they should be/can be advocating for. Families need strategies and to know where to get necessary information. There is also tremendous emotional fortitude required for families to [emotionally] persevere. Multi-stressed families have a lot going on in their lives. Garnering the emotional strength, in addition to the financial resources, to navigate a complex system can be inefficient and confusing. As a result, many families grow frustrated, even angry and resentful. This, then, can lead to the perception that they are confrontational. Many of these struggling families already feel powerless and unheard. The systems in which they need to be advocating (education, health care, government) are often systems in which they’ve faced oppression. Attempts at advocating for their child often exacerbates the family’s previous experience and feelings; this adds to the barriers families face in advocating for their children.
Kate Patton Regal
PR Director, Wediko Children’s Services
I remember taking care of my mom through her chronic and debilitating illness and feeling like it was two more full-time jobs on top of my ‘day job’ – 1) the physical and emotional care I provided, plus 2) the advocacy to get what she needed. I felt fortunate to be a strong advocate and was very aware of my own perseverance in finding resources. I would listen to others, who didn’t have a lot of family support, and many lacked the grit that keeps you going because the system can really wear you down.
This past week, I read the report in which Boston was ranked #1 for income inequality. I also know Boston is home to many not-for-profits, including Wediko, working hard to improve access to vital services. Working to reduce barriers – financial, emotional, and intellectual – will ensure that children and families are able to get the support they need. Through our collaboration with school and community partners, we strive to understand each child’s strengths and struggles, proactively addressing needs so that families don’t have to fight for them. Parents/Guardians are always a welcome part of the process, but shouldn’t be the only ones recognizing a need, asking for support, and holding others accountable.
Reactions of your own?
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