Jessica Howard on Leadership Development
By Marcia Tewell
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. Currently the D. D. Council funds a project at Sewall Developmental Center in Denver. Two other projects for brothers and sisters of individuals with disabilities exist with Sibling Tree in the metro area and Access and Ability in Greeley. The Council funded the THRIVE Center in Aurora in previous years for the same purpose which included participants from Aurora and refugee communities. The following is an interview with Jessica Howard, who was a participant in the THRIVE grant and is now a D.D. Council member. In her other roles, she works at the ACLU of Colorado and is the parent of a child who accesses Special Education supports via an Individualized Education Plan.
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.
What was the biggest change that you got from the ideas that you were exposed to during the THRIVE Center’s classes?
The class participants included refugees who did not speak English as their first language and came from difficult circumstances in other countries. It was an eye-opening experience to know how much the additional layers of complexity, such as language barriers and cultural misunderstandings, add to the navigation and inclusion process of the disability system. There is a lot of work to do in this area.
Are you doing anything presently as a result of your participation in the grant?
As a result of learning more about systems and gaining important leadership skills, I am a member of the D. D. Council, joined the PAMI (Protection and Advocacy System for Individuals with Mental Illness) Advisory Council at Disability Law Colorado as an ACLU representative, and 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.
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 waitlist 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. Educationally, my son is in a segregated, center-based classroom at a nearby neighborhood school, which is predominately made up of African-American and Latino students. Historically, my community does not always have access to the best options for well-performing neighborhood schools, so my son’s ability to ‘choice’ into another school is pretty limited. It just seems to be how Denver Public Schools arranges their special education services for the most part.
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.
What keeps you moving forward in difficult times of advocacy on a personal front or on a systems front?
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.
What inspires you to get up and keep going on the issues we face in our communities?
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 of 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.