Visible, Diverse and United:

Breakout Session #5: Programming and Systems Change

In addition to specific issues concerning parents with disabilities (transportation, education, recreation and parent rights), Task Force attendees also identified broader concerns with existing Bay Area systems. Although many of these system concerns apply to people with disabilities in general (not necessarily parents with disabilities), the negative impact of poor or inaccessible services is compounded by the disruptive and negative impact on children and other family members of parents with disabilities. Parents with intellectual disabilities were considered an especially vulnerable and underserved population within the Bay Area.

Specific Problems:

• More housing and shelter options for people with disabilities -- as well as specialized support for parents/families with disabilities. Options should cover varying or graduated levels of support range from 24 hour supervision to locked apartment buildings for RCEB consumers with daytime apartment manager to foster care for whole families. The idea of making existing shelters more disability aware or accessible is an ongoing area of need as well (e.g., there are no Bay Area shelters that are accessible for the deaf). Also, many shelters are not always workable for parents with intellectual disabilities (or some decline to take women with intellectual disabilities).



• Lack of coordination and collaboration between services (e.g., agencies serving adults with disabilities and agencies serving children with disabilities). Service systems and programs tend to have their target populations as a primary focus, frequently ignoring or excluding other family members. Many agencies serving children with disabilities assume that a parent is able bodied, and many agencies serving adults with disabilities assume that their children are non-disabled - or simply do not consider parenting an ADL (Activities of Daily Living).



• Need for educating providers and consumers about what is available or mandated for parents with disabilities. Broaden and diversify providers' knowledge of resources within their own service systems or programs as well as outside or beyond their particular areas/scopes. The issues of diversity within groups of parents/families with disabilities would be an important focus of such training needs.



• Many providers and systems providing parenting support are not trained for dealing with parents with disabilities.



• Lack of case management services outside Regional Center/DD systems for people with physical disabilities, people who are deaf or hard-of-hearing, people with medical disabilities, people with mental illness. Also, people with cognitive or developmental disabilities who do not qualify for RCEB services.



• The lack of available data on the number of parents in RCEB system is a barrier to outreach.



• Income and affordability of services. The working poor and even those families of medium income might not qualify for financial assistance or for certain types of services because their family income disqualifies them for services (e.g., free school lunches). Yet, these families often cannot afford services, equipment, etc without reduced fees or sliding scale because of extra out-of-pocket disability expenses.

Specific Recommendations:

• Develop training modules that professionals can use to train other professionals on a variety of parenting with a disability issues/areas of need.



• Require more systems and agencies to collect data on the numbers of parents with disabilities served.



• Continue the Bay Area Task Force, or create county-by-county advisory committees that could meet on a bimonthly or quarterly basis to foster a sense of direction and continuity, keep these issues alive.



• Encourage different agencies to collaborate and coordinate by writing grants together.



• RCEB's internal Parenting Committee should include more external members and community liaisons.

• Introduction and Featured Presentations


• Overall Recommendations
• Breakout Sessions
1. Breakout Session #1: Parental Rights
2. Breakout Session #2: Recreation
3. Breakout Session #3: Parents with Disabilities and Their Child's School System
4. Breakout Session #4: Transportation