My Parenting Journey: Becoming a Parent Leader
My Parenting Journey: Becoming a Parent Leader
Receiving the diagnosis of a disability or special health care need for a son or daughter is a life changer for most parents. All of us have different reactions to the initial diagnosis and subsequent changes that happen in our lives. For some parents, these changes include becoming a Parent Leader in the disability community.
Jessica Howard is a parent whose son’s diagnosis of autism propelled her into leadership. Today’s blog is an interview with Jessica by Marcia Tewell of the Colorado Developmental Disabilities Council.
MT: What has influenced your work on disability and social justice issues? Why do you do what you do?
JH: I was interested in political science in college and how policy decisions affecting marginalized communities are made. During that time Paul Childs, a developmentally disabled teen, was shot and killed by Denver police officers as they responded to a call at his family’s home in northeast Denver. I became interested in the community’s response to this tragic event, as well as the creation of the independent monitoring process for the Police Department. Additionally, my son was diagnosed with autism in 2012 and I became interested in not only accessing decent therapeutic services, but how to set high expectations and dream of a meaningful future for him.
MT: You participated in a Leadership Class sponsored by the DD Council. What are you doing presently as a result of your participation?
JH: As a result of learning more about systems and gaining important leadership skills, I am a member of the Colorado Developmental Disabilities Council as a parent representative. I joined the Protection and Advocacy System for Individuals with Mental Illness (PAMI) Advisory Council at Disability Law Colorado as an ACLU representative. I continue to learn more about policy changes and leadership within the disability advocacy community, especially in the criminal justice system. It has been good to try to put new ideas into practice.
MT: What are the most pressing issues you see for your family at this point in time?
JH: Consistent health care is our primary concern. My husband was employed by a large company when my child was diagnosed with autism, but his company was self-insured under the Employee Retirement Income Security Act (ERISA), which did not cover basic needs such as Occupational Therapy, Physical Therapy, Speech Therapy, or Positive Behavior Therapy. My son was on the wait list for the Children with Autism Waiver, and eventually was selected to receive services, but not for long before he aged out.
Luckily, my employer’s medical insurance picked up the coverage for his services when he aged out of the waiver. His services are now covered by my insurance, which is not a self-insured model, so there are basic requirements of what is covered and therapies are part of that. I don’t know what my husband and I would do if we went back to the issues of having a pre-existing condition and being shut out of insurance for our son.
The additional services my son receives at home have greatly helped with potty training, using hand gestures and visual supports. He can now indicate if he is hurt. It is great to get supports that assist his learning.
MT: What kinds of supports do you think would be most helpful to empower families as they move into a position of leadership within the disability advocacy community?
JH: It takes family supports to participate in advocacy work on a volunteer basis. There should be stipends for the time participating on a volunteer basis. There are many responsibilities as a parent and time is a precious commodity, so it is difficult with so few hours in the day. I suspect many working parents, especially single parents also have a hard time participating in leadership trainings, so their voice is often missing. It should not “cost” to participate.
MT: What keeps you moving forward in difficult times of advocacy? What inspires you to get up and keep going on the issues we face in our communities?
JH: Because my son is African-American and has a disability, there is an increased level of concern and advocacy to be done until he can take over for himself. There are issues of excessive force, suspension and expulsion, seclusion and restraint, and many others to which I will continue to lend my voice. As a mother, I have the job of doing advocacy for many years ahead.
I use the concept of hope to stay engaged in the change process. When I look back at life for persons with disabilities a generation or two ago when many individuals were institutionalized, changes can be noted. If we have made strides since then, we should be able to keep up the momentum now. There is so much work to be done.
Editor’s Note: The Colorado Developmental Disabilities Council funds local leadership development grants that take many forms and have a wide range of participants and locations statewide. The purpose of the grants is to give participants a skills and values base that allows them to advocate in policy areas for system change that will promote the values of inclusion and social justice as well as question the status quo. The Colorado Developmental Disabilities Council meets bi-monthly to implement a 5 year plan. The meetings are open to the public and family members are encourage to attend and participate. The Council also has several subcommittees, including Legislative and Public Policy and Planning and Grants, that family members can join. For information on Council or subcommittee meetings, please email: Seth Downs
Are you interested in increasing your Parent Leadership Skills? At P2P, we love the online option called Partners in Policy Making. You can take a number of self-paced courses with topics that include community living, history of disability advocacy, education, public policy, and employment. If you are interested in taking the Partners in Making Your Case (public policy) course and would like to join a discussion group on this topic, please email: firstname.lastname@example.org All partners classes are free!
Are you connected? Parent to Parent of Colorado connects families of sons and daughters with disabilities and special health care needs to information and emotional support. It’s free and easy to join!