by Valerie S Pautsch Marketing Manager, OU Physicians Marketing & Communications

With an array of programs and agencies, both public and private, in place to better serve the needs of children with disabilities, it may be easy to overlook related conditions of growing urgency.

According to Lisa Simmons, Sooner Success Region I coordinator, there is one such need that’s really quite obvious. “Children with disabilities, whether mental, physical or developmental, grow up and become adults with unmet needs for functional support. Many will face ongoing challenges and a variety of obstacles as they seek appropriate resources.”

 While some states have had programs in place for decades, the needs in our state are significant and awareness is lacking. In an effort to bridge the gap between needs and available services, the Oklahoma Developmental Disabilities Council in October approved $95,000 to fund an initial phase of a Sooner Success program, hoped to be the first of multiple phases in an ongoing initiative. The new program is specifically focused on the needs of adults with disabilities who become parents.

 In the first year currently funded, the mission is two-fold:

• Determine the size of the affected population in Oklahoma, while seeking a better understanding of the barriers and problems faced.
• Bring to Oklahoma professionals with depth of experience in programs of this kind to demonstrate the potential and possibilities that exist.

 Sooner Success personnel have turned to Through the Looking Glass, not only as a working model of success, but also as a resource for creating solutions. Based in Berkeley, California, Through the Looking Glass is an organization with a 30-year history working with similar initiatives. Last year, Sooner Success visited the organization to observe and learn.

 According to Aietah Stephens, state director of Sooner Success, under the Section of Developmental and Behavioral Pediatrics, OU College of Medicine, a portion of ODDC funding will be used to bring a TLG team to Oklahoma for an entire week. “Sooner Success will sponsor planned conferences in different regions of the state, inviting TLG to lead trainings for leaders of key agencies providing family services and other partners.”

 Over the course of a year, Sooner Success leaders will strategically utilize ODDC funding for the development of a collaborative, interagency program aimed at better equipping parents with disabilities to become more effective in caring for their children. Sooner Success’ identified goals are particularly ambitious, given the

12-month time frame. Staff members are hopeful that progress will be substantial enough to secure additional funding for a next phase of program development.

 “The interagency, collaborative model represents a paradigm shift in how we identify and address the needs of this underserved population,” said Simmons. “Often, a basic assumption is made about the ability of some individuals to function acceptably as parents. In truth, parents with disabilities have the same right as any parent to be imperfect, to make mistakes and experience failure at some point in their parenting ’careers.’“

 Simmons cited the common practice of immediate and automatic removal of a child or children from a home, often based on uninformed assumptions or an arbitrary judgement.

 “Unless the child is at risk due to negligence or an unsafe environment, removal can result in trauma with adverse consequences for the child as well as the family,” said Simmons.

 She acknowledged that an alternative process - to recognize and assess a need and connect parents with resources appropriate to their disabilities - is more difficult to implement. But despite the complexities, the results are more effective and positive in the longer term.

 “Under our current system, each state agency takes a different approach, not only to the assessment process, but also to remediation. For example, any given case may include human services, foster care, health care - all of which, at some point will probably have overlapping legal issues to navigate.”

 Simmons described parents who experience a range of disabilities including developmental, intellectual, physical and behavioral health conditions. Behavioral health conditions might include depression or bipolar disorder, while intellectual disabilities are categorized as impaired or limited cognitive function and/or lower IQ level. In addition to these, the obstacles faced by the parent with significant physical disabilities are daunting.

 “Assistive technologies, including equipment and adaptive devices are more advanced than ever before and home environments can be modified to help compensate for physical limitations,” said Simmons. “The parent will need to find an occupational therapist to help fit certain devices and to suggest appropriate home modifications. The collaborative will seek to open the doors to make these types of resources more accessible.”  

Stephens and Simmons, along with Sooner Success personnel across the state, see potential for the initiative to grow into a more comprehensive effort. Stephens said, “Though the full scope of impact can’t be fully known, it is certainly possible that it will cross multiple layers of community and culture,” noting in addition that future phases may incorporate qualified home educators, parent-to-parent mentors and coaches and perhaps some form of volunteer support.

 “Awareness is growing,” Simmons said. “People across many agencies and organizations in all areas recognize the critical need and truly desire to work together for change in our systems. The futures of our children and families depend on it.”