Visible, Diverse and United:
A Report of the Bay Area
Parents with Disabilities and Deaf Parents
October 30, 2006
Report compiled by Paul Preston, Ph.D. and Through the Looking Glass Staff
This report was conducted as part of a Through the Looking Glass’ project supported by a grant from The California Endowment. The opinions contained in this publication are those of Through the Looking Glass and do not necessarily reflect those of The California Endowment.
©2007, Through the Looking Glass “Visible, Diverse and United: A Report of the Bay Area Parents with Disabilities and Deaf Parents Task Force”
55 representatives from Bay Area counties met in Oakland, California on October 30, 2006 to initiate the Bay Area Parents with Disabilities and Deaf Parents Task Force. The Task Force was convened by Through the Looking Glass (TLG) as part of a project funded by The California Endowment. This report was compiled by TLG staff, and is based upon extensive minutes taken during the meeting as well as draft versions that were circulated among Task Force members and posted on TLG’s website for comments.
There are over 211,000 parents with disabilities in the Bay Area. Yet, many of these parents and their children are inappropriately served by existing services and available resources. Many service systems in the Bay Area seem altogether unaware of parents with disabilities and their children. Others that do provide services often do not know the best way to serve them.
The primary goal for this meeting was to identify and prioritize problem areas and potential solutions for parents with disabilities and their children living in the Bay Area. The Task Force included diverse parents with physical disabilities, Deaf parents, parents who are blind or partially sighted as well as parents with other disabilities and medical conditions.
The Bay Area Task Force began with featured presentations on particular issues affecting a broad range of parents with disabilities and/or specific populations of parents with disabilities. Each presenter also described innovative solutions that have addressed these issues:
➢ Kelly Buckland. President, National Council on Independent Living Insuring the Rights of Parents with Disabilities; Historic Legislation in Idaho
➢ Ella Callow, J.D. Family Law Advisor, National Resource Center for Parents with Disabilities Custody Issues among Parents with Disabilities; Recent Legislation in Kansas
➢ Christi Tuleja, OTR, Adaptive Babycare Equipment Specialist, Through the Looking Glass Occupational Therapist Assessment in Custody Cases
➢ Julie Rems-Smario, Executive Director, Deaf Hope Domestic Violence and Abuse in the Deaf Community
➢ Brenda Smith, Parent and Beth Smith, Family Clinician, Through the Looking Glass Parent Support Group and Training Home Visitors
➢ Judi Rogers, OTR/L, Pregnancy/Birthing Specialist, National Resource Center for Parents with Disabilities The Disabled Women’s Guide to Pregnancy and Birth
➢ Debbie Bacon, Project Manager, National Resource Center for Parents with Disabilities Hands-On Parenting: A Resource Guide for Parents who are Blind or Partially Sighted
The Task Force divided up into five breakout sessions, each focusing on a particular issue affecting parents with disabilities and their children: Transportation; Recreation; School Systems; Parental Rights; and Programming/Support Systems. These priority issues were identified through previous surveys conducted by Through the Looking Glass as well as by meeting participants. Specific details of each of these sessions follow below. Overall, however, breakout participants stressed several overarching themes that are common to all five issues:
• Parents with disabilities and Deaf parents are a large but invisible minority within the Bay Area. This invisibility contributes to a lack of preparedness and appropriate accommodations by professionals and service systems who may be altogether unaware that there are thousands of parents with disabilities in our local communities. This invisibility also contributes to the ongoing isolation of many parents with disabilities – who have no contact with other parents with disabilities within their home communities and neighborhoods with whom to share parenting information and resources.
• Solutions must address the diversity of parents with disabilities. This diversity includes not only a wide range of parental disabilities and medical conditions, but ethnicity, language, locale (e.g., rural versus urban) as well as family configuration and age of the children. Without appropriate solutions that meet the specific needs of diverse parents with disabilities, thousands of Bay Area families will continue to be un-served and unnecessarily stressed.
• Explicit and implicit discriminatory language against parents with disabilities must be eliminated in policies and laws throughout Bay Area communities and service systems.
• Although there are generally few if any appropriate services for parents with disabilities in most Bay Area communities, ironically working parents with disabilities are less able to secure whatever services might exist because their family income levels exceed a given system or organization’s financial criteria – at least on paper. However, these financial criteria do not acknowledge that many parents with disabilities must routinely spend considerable financial resources on medical, transportation, accommodation, and equipment needs.
• Service systems within the Bay Area must assess their services and clearly articulate their policies regarding parents with disabilities. Even within the same system, the existence, availability and quality of particular services to parents with disabilities and their children are highly variable across Bay Area communities. Such discrepancies create neighborhoods of haves and have-nots.
• Families with disabilities are routinely divided between systems and organizations providing services only to children/children with disabilities and those providing services only to adults/adults with disabilities. This dichotomy creates a lack of coordination of services, duplication of efforts, conflicting priorities, and is especially problematic for families that include a parent and a child with a disability. Most importantly, such divisiveness generally does not recognize the value and importance of working with the family as an intact whole.
• Service systems and organizations in Bay Area counties must begin collecting data on parents with disabilities being served. Parents with disabilities remain invisible in most of these organizations and systems, leaving unanswered whether and how many parents are actually being served by a given organization or system.
• A consistent theme across all five breakout topics was the critical need for education and training for parents with disabilities and professionals within the Bay Area. However, there are almost no funding sources for education and training concerning parenting with a disability.
• Parenting adaptations and equipment is a documented solution to several problem areas for parents with disabilities (e.g., custody, transportation, recreation). However, the lack of funding to create adaptive babycare equipment and lack of knowledge about other parenting adaptations effectively eliminates these solutions for many parents with disabilities and their children.
• Parents with disabilities need to know their rights as well as what options already exist. Because the availability and appropriateness of support and services varies so greatly throughout Bay Area communities, parents need to be educated so they can advocate for themselves – especially if the service or option already exists but is not widely known or available depending on the particular community or county.
Breakout Sessions: Parental Rights, Recreation, Education, Transportation, and Support Systems
Breakout Session #1: Parental Rights
Families in which one or both parents have a disability face significant barriers as they attempt to raise their children. These barriers include: attitudinal barriers including discrimination; lack of information about parenting adaptations; lack of funding for adaptive technology; exclusion from public policy considerations; and, lack of disability expertise in current service systems. These barriers are especially evident in situations in which a person with a disability’s right to parent and/or their parenting capability is questioned. Parents with disabilities and deaf parents in the Bay Area as well as across the U.S. report concern and fear that they may lose custody of their children due to discriminatory legislation, societal bias and/or legal and social service professionals unprepared to fairly assess parents with disabilities.
As currently written, child custody laws in almost every state including California reflect the historical bias against parents with disabilities. Such laws present discriminatory and unrealistic views of parental disability by constantly citing disability as a factor in determining a parent’s ability to raise their children. Such references imply that parents with disabilities are incapable of properly caring for their children. However, it is usually not a person’s disability that inhibits a person’s capacity to provide a stable and loving home for children -- rather it is a lack of disability related resources and supports that can result in an unstable home environment. Many parents with disabilities provide excellent care and stable homes for their children. Factors that should be considered in child custody cases include the same concerns as for those parents without disabilities -- abuse, neglect, abandonment – not the presence, type or degree of a parent’s disability.
Specific Problems with Parental Rights:
➢ Unwarranted and unnecessary removal of children from their parents with disabilities.
➢ Lack of affordable and knowledgeable legal representation for parents with disabilities dealing with custody issues.
➢ Inappropriate/discriminatory language in current laws concerning parental rights. For example, California law singles out “developmental disability, “”mental illness” or other parental “deficiency” as reasons for terminating parental rights (on the basis of two experts, who themselves may not be knowledgeable about disability).
➢ The medical model (e.g., a disabled individuals are primarily defined according to their “handicap,” impairment or what they cannot do) as well as other similar professional models typically pathologize those with disabilities and may clash with a civil rights model (e.g., disabled individuals do not need curing or rehabilitating, but need equal rights, integration and appropriate accommodations).
➢ Although providing trainings to Bay Area professionals and service systems regarding parenting with a disability is crucial, there is almost no funding for adaptive babycare equipment or parenting adaptations (which are often suggested during such trainings as a means to alleviate or eliminate potential problems for parents with disabilities).
➢ There are problems with the quality and appropriateness of evaluations of parents with disabilities involved with child protection systems or family courts. These evaluations often determine the child custody outcome. There are also many problems with the quality and appropriateness of existing services provided to parents with disabilities and their children during the reunification process. When services are ineffective parents may be blamed, assumed to be noncompliant or unable to benefit from services.
➢ Even if legal and social services professionals are educated and trained concerning parents with disabilities and disability-appropriate evaluations and services, professional turn-over is an ongoing problem in maintaining adequately trained professionals.
Specific Solutions regarding Parental Rights:
➢ Create legislation similar to the historic legislation passed in Idaho (2003) and Kansas (2006). Each state passed legislation that removed discriminatory language against parents with disabilities as well as insured equal rights and disability-appropriate evaluations of parents with disabilities. TLG consulted in both of these cases.
➢ Develop resources and training for judges concerning parents with disabilities (similar to what exists in Tribal Law).
➢ Encourage Bay Area systems to provide training concerning parents with disabilities, rather than be at risk of lawsuits. For example, a recent case in San Mateo County resulted in mandatory training to three county systems. (CPS intervened with a newborn simply because both parents were blind.) The suit was filed by Disability Rights and Education Fund (DREDF), and the $188,000 settlement included extensive mandated trainings by TLG to the San Mateo systems involved (CPS, Sequoia Hospital and Early Intervention).
➢ APA (American Psychological Association) has a very large Public Interest Advocacy Board with a national review. Psychologists have guidelines for custody evaluations that should be reviewed and include guidelines for educating professionals about parents with disabilities.
➢ Train foster care nurses, as they can have an effect on the courts.
➢ Identify funding streams for services and resources for parents with disabilities.
➢ Contact and educate different professionals about parents with disabilities and parental rights. Provide CEU’s for professionals.
➢ Send a letter from the Bay Area Task Force for Parents with Disabilities and Deaf Parents to the Children and Families Commission in each county, and ask what services they have or don’t know about.
➢ Require Bay Area counties and service systems to begin counting and identifying parents with disabilities so they will be more visible and their needs will be better documented.
➢ Encourage diverse representation on the Task Force so that many ethnic and racial communities are represented.
Breakout Session #2: Recreation
The Bay Area is significantly lacking in accessible and low-cost recreational opportunities that allow all family members with a disabled parent to participate together as a family. Although there are several excellent recreational programs specifically for individuals with disabilities, they are typically designed either for children with disabilities or adults with disabilities – rarely for entire families that have disabled and non-disabled members. Similarly, public recreational sites such as playgrounds and parks are either inaccessible altogether or only accessible for young children with disabilities – rarely for a parent/adult with a disability. Individual family members are not only denied the economic, social, physical, and psychological benefits of recreation, but the opportunity for the family as a whole to play together and build a stronger healthier family.
Specific Problems with Recreation:
➢ Bay Area counties and communities are not aware of the need for accessible recreation – especially recreational activities that all family members can participate in.
➢ The policies and regulations for accessible recreation are not clear.
➢ There is a lack of information about what accessible recreational activities are currently available in the Bay Area.
➢ There are almost no accessible public playgrounds in the Bay Area – for children with disabilities, and especially not for parents with disabilities accompanying their children. More adaptive technology and equipment on playgrounds is needed in order for children to participate (e.g., soft floors).
➢ Most public pools are not accessible, they are cold, and there are not enough indoor pools.
➢ The cost of many recreational activities is especially problematic for low-income families (e.g., tickets, transportation, etc).
➢ Children with disabilities are shut out of many recreational opportunities, even those offered within their schools. Many children cannot participate in school-based recreational activities because of concerns about liability. Most P.E. programs are not accessible. There are not enough after-school programs.
Specific Recommendations addressing Recreation Issues:
➢ More parent advocacy, training and education about the benefits and opportunities for family recreation.
➢ Educate and train recreational programs how to provide accessible recreation for all ages.
➢ Create legislation, policies and guidelines for accessible recreation for all ages.
➢ Counties need to allocate more funding to increase accessible recreation.
➢ Encourage existing recreational programs that serve either children with disabilities or adults with disabilities to expand opportunities for the whole family to participate (i.e., disabled and non-disabled adults and children).
Breakout Session #3: Parents with Disabilities and Their Child’s Center and/or School System
Bay Area Task Force participants reiterated a frequent complaint of parents with disabilities nationally: they are excluded from active participation in their children’s school life. Typically, because the majority of children of disabled parents are not disabled, center and/or school administrators and teachers are unaware of or insensitive to the needs of parents with diverse disabilities. This can be to a number of factors: the physical inaccessibility of the center and/or school (e.g., inaccessible sites for a parent-teacher meeting or other school activities that other parents attend); inaccessible communication modes (e.g., no interpreters for Deaf parents or inaccessible media for parents who are blind); assumptions about parents helping their children with homework if the materials are not in accessible formats. Further, because of a lack of education or familiarity with diverse disabilities, center and/or school officials may make inaccurate or negative assumptions about the capabilities of parents with disabilities.
➢ Parents with disabilities do not know what their rights are with regard to their children’s centers and/or schools.
➢ Center and/or school systems do not know what their legal obligations are with regard to parents with disabilities.
➢ Center and/or school administrators and teachers often do not know if any of their children’s parents have disabilities or are Deaf.
➢ Inaccessible or inappropriate communication from center and/or school personnel in-person, by phone or written communication (e.g., no interpreters, inaccessible formats for written materials, linguistically difficult information for parents with intellectual disabilities).
➢ Information from the centers and/or schools is often not sent in a timely manner (i.e., a parent may need several days notice in order to arrange transportation or get materials Brailled).
➢ Even centers and/or schools that have classrooms/programs for children with disabilities may not consider the perspectives or needs of adults with disabilities or that they can be parents.
➢ If there are multiple children in the family or if the child changes centers and/or schools, navigating different schools or different school districts can be challenging.
➢ Although most centers and/or schools include curricula on diverse ethnicities and languages, few centers and/or schools address disabilities unless the focus is on children with disabilities.
➢ Deaf parents particularly noted that teachers inappropriately use their hearing children to interpret conversations between teachers and parents. Other parents with disabilities described center and/or school personnel who are visibly uncomfortable, paternalistic or insensitive when talking with them.
➢ Several parents with disabilities expressed considerable frustration and difficulty getting their children’s special needs determined or accommodated. This is partly a result of overworked center and/or school staff.
➢ Parents with disabilities need to become more visible and more active in their children’s centers and/or schools: offer to do classroom presentations; get involved with the PTA; explain the particular accommodations or access needed to center and/or school personnel; demystify and normalize disability.
➢ Educate center and/or school systems as to their legal obligations to provide accommodations and access for parents with disabilities. Consolidate and summarize the rights to accommodations and access on a website so that parents with disabilities can provide this information to their child’s center and/or school.
➢ Educate center and/or school personnel about options for communicating with people with disabilities (e.g., relay services, email, text-messaging, large Print) as well as sensitivity to diverse disabilities. Consolidate and summarize these options on a website so that parents with disabilities can provide this information to their child’s center and/or school.
➢ Teacher training and continuing education programs should include information regarding working with parents with disabilities.
➢ Centers and/or schools should include curricula on disabilities, including parenting with a disability. Invite parents with disabilities to classroom presentations.
➢ If applicable to a particular disability, parents should request that center and/or school materials distributed to parents be sent ahead of time so that the parent can arrange for particular accommodations rather than relying upon others for assistance.
➢ Work more from the top down: Learn where the funding is going. Educate lawmakers and administrators.
➢ Regarding dealing with centers and/or schools of children with disabilities:
➢ Parents should demand that their children get tested early for learning differences.
➢ Make center and/or school personnel aware that a child can have more than one disability. For example, if a child is diagnosed with a cognitive impairment, other disabilities (such as learning disabilities) should not be discarded.
➢ Teach children to become their own advocates; have children attend their own IEPs
Breakout Session #4: Transportation
Without accessible, affordable and routinely available transportation, many people with disabilities are excluded from participating in everyday life. Transportation provides entrée to employment, education, recreation, healthcare and socialization. Although the Bay Area is often regarded as a model community for people with disabilities, Task Force participants underscored how unavailable and erratic transportation options really are for people with disabilities in the Bay Area. Transportation options are especially problematic when traveling between one community, county or transportation system and another. Outdated, subjective or confusing criteria in order to be eligible for certain transportation options further contribute to a logistical nightmare when traveling outside the home.
Transportation issues present additional challenges to parents with disabilities, and Task Force members stressed that Transportation was an issue that affected more aspects of parenting with a disability than any other issue. This confirms a 1998 national study by Through the Looking Glass in which 79% of parents with disabilities reported transportation as a problem that interfered with or prevented routine and critical parent-child activities. A parent with a disability may not only have to arrange and coordinate transportation for her/himself, but often for their child as well. Coordinating and waiting for transportation can easily consume hours each day. Many transportation options are either not available altogether or not available for a parent and child traveling together. All this can be especially stressful when a child is sick or if there are several children in the family who are traveling at the same time.
Specific Problems with Transportation:
➢ Uniform policies and services. Task Force members repeatedly cited examples of the lack of clearly defined policies throughout all Bay Area public transportation systems – resulting in highly variable, inconsistent or even non-existent transportation options for parents with disabilities. For example, whether or not a child can accompany a parent at all, whether the parent must bring a car seat for the child to ride in, whether paratransit can be used to transport a non-disabled child accompanied by their disabled parent to the child’s center or school, whether an attendant/aide is allowed to accompany the parent – and, if these options exist, whether or not there is an additional cost to the parent.
➢ Safety. There are no uniform safety standards for different modes of transportation or transportation systems that address parents with disabilities traveling with their children. This includes private vehicles, municipal bus and light rail systems, taxis, BART, paratransit, school buses.
➢ Accessibility. Although the ADA provides guidelines for many aspects of transportation access in general, it does not consider situations involving parents with disabilities and their children. As a result, the degree of accessibility and the levels of service are locally determined, often precluding viable options for parents with disabilities.
➢ Paratransit. Task Force members were especially concerned over problems with paratransit in the Bay Area. There is a high degree of inconsistency among paratransit systems within the Bay Area with regard to availability, scheduling, criteria for participation, responsiveness, extra costs, allowable pick-up or drop-off locations -- and whether or not a particular paratransit will accept or accommodate children accompanying their parent. Since paratransit is often the only transportation option for many parents with disabilities who do not live near public transportation, this is an extremely critical issue for many families in the Bay Area.
➢ Disability-appropriate accommodations and equipment. Different types of disabilities in parent or child require different types of transportation modifications or adaptive equipment. However, many parents as well as most transportation workers and officials do not know what is required, what works or what is available. In addition to educating parents and transit officials about transportation options and accommodations, new designs and new equipment are needed.
Specific Recommendations addressing Transportation Issues:
➢ Establish clear and standard policies within and across transportation systems concerning parents with disabilities and their families. These policies should be standardized as well as flexible – that is, policies that are uniform, clearly articulated, but also accommodate parents with diverse disabilities in diverse communities and family configurations.
➢ Build coalitions with others who rely on public transportation (e.g., seniors and low-income populations).
➢ Identify best practices in communities and transportation systems, and sharing these successes with other parents. For example, Santa Rosa was cited by several participants as being especially helpful compared to other areas in the Bay Area.
➢ Identify currently available equipment or adaptive equipment that would facilitate traveling with children, and make this information widely available. For example, Sit-N-Stroll is a combination stroller, car seat and booster seat that many parents cited as particularly helpful when traveling with a small child.
➢ Create a website that identifies what transportation options and what transportation-related equipment is available for parents in the Bay Area. One suggestion was to work with the Alliance for Technology Access (ATA) that has a database and website.
➢ Encourage and fund new technologies and new adaptive equipment that address transportation needs of parents with disabilities.
➢ Identify representatives on area transportation advisory boards who will promote issues of concern to parents with disabilities. For example, the Metropolitan Transit Agency (MTA) advisory committee.
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.
➢ 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 c are 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.
➢ 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.
©2007, Through the Looking Glass “Visible, Diverse and United: A Report of the Bay Area Parents with Disabilities and Deaf Parents Task Force”
Additional Copies and Information
Additional copies of the Bay Area Task Force report can be viewed at TLG’s website: www.lookingglass.org.
For additional information, please contact:
Through the Looking Glass
2198 Sixth Street #100
Berkeley, CA 94710
Phone: 1-800-644-2666 (voice) or 1-800-804-1616 (TTY)