Programs that serve the needs of parents with disabilities are scarce. Nevertheless, despite limited funding and little national attention given to parents with disabilities and their families, a number of programs and support services have begun to emerge. This chapter highlights several of these programs. Collectively, they show promise, long-term sustainable impact, and the potential for replication. The various levels of support they offer—from parent groups to weekly home visits to residential—represent the spectrum of community services needed to address diverse family situations. Generally, the programs highlighted in this report are small, local programs that are part of larger disability services organizations. For the most part, they provide services to parents with a certain disability (e.g., intellectual disabilities or psychiatric disabilities but not both). Despite their small size and limited focus, these programs show the enormous potential for serving parents with disabilities and their families. With more funding, programs like these can grow and develop nationwide to serve a currently underserved segment of the American people: parents with disabilities and their families.
Through the Looking Glass, Berkeley, California
Founded in 1982, in Berkeley, California, Through the Looking Glass is a nationally recognized center that has pioneered research, training, and services for families in which a child, parent, or grandparent has a disability. For nearly 10 years before its establishment, TLG founders had provided disability-culture-based counseling services to couples and families with older children in the early independent living movement at the Berkeley Center for Independent Living.
TLG plays a central role in the national disability community, networking and providing resources, training, and technical assistance regarding parents with disabilities and their children. It has helped identify unmet needs and issues that can be pursued in research and clinical services. TLG’s national networking role evolved through the 1980s; beginning in 1993, it led to the establishment of other national centers for parents with disabilities and their families. These centers have conducted research and developed legal expertise, and have provided dissemination, professional training, technical assistance, publications, two international conferences, and a parent-to-parent network for parents with disabilities. Currently, TLG’s National Center for Parents with Disabilities is directing an NIDRR-funded project: Families with Disabilities Through the Life Cycle: Disability Culture Perspectives. The many subprojects will include national training for the Early Head Start and Independent Living systems regarding parents with disabilities and their children.
Since its inception, TLG has provided primarily home-based infant mental health care, family support, case management, early intervention or developmental services, and disability resources to families in which parents or children have diverse disabilities. It has also conducted numerous research and demonstration projects focused on parents with disabilities and their children primarily funded by NIDRR. Staff includes social workers, marriage and family therapists, psychologists, occupational and speech therapists, developmental specialists, rehabilitation counselors, nurses, childbirth educators, doulas, early childhood educators, attorneys, and researchers. Nearly 80 percent of the culturally and linguistically diverse staff has personal or family disability experience.
In the mid-1980s, TLG began providing alternative assessments when parents with disabilities were involved with child protective services. According to its founders, “It was startling to discover the degree of pathologizing and the lack of disability expertise in child protection evaluation practice.” One adapted parenting assessment is the Adapted Baby Care Assessment for Parents with Physical Limitations or Disabilities, a tool developed by occupational therapists and infant mental health specialists at TLG. This assessment involves multiple days of observation of the parent caring for the child in the home and on outings into the community. The occupational therapist assesses the parent’s baby and child care abilities in all areas of care. Through this process, contextual barriers and helpful strategies are identified that would foster the parenting care abilities. The final report documents the parent’s current functioning as well as strategies and adaptive equipment that could support and improve this functioning. In the assessment protocol, the parent will be provided with adaptive equipment and trained on the use of physical strategies, then reassessed.
A parallel assessment approach has been used when parents have vision, cognitive, or intellectual disabilities. All assessments include thorough observation of parent-child interaction over multiple days, interventions and adaptations, and more observation to assess their impact. The assessments have been used in child welfare, family court, and adoption situations.
TLG has been used by social service organizations, families and advocates to establish whether, with proper adaptive equipment and services, the removal of a child can be prevented.
The volume of calls reporting discriminatory practices in custody litigation became so great that, in 2004, TLG established the Legal Program for Parents with Disabilities. The program handles approximately 900 contacts a year with families or professionals involved in such cases throughout the United States.
In 2011, TLG served 400 families in the San Francisco East Bay, primarily during weekly or biweekly home visits, and its National Center provided training or technical assistance to almost 19,000 people.
TLG’s preventive early intervention has kept thousands of families from ever becoming involved in situations in which their parenting or custody is questioned. For example, TLG’s tailored services to parents with intellectual disabilities and their children have achieved a significantly lower rate of out-of-home placement (2 percent to 7 percent) of children of parents with intellectual disabilities since 1990, compared with the 40 percent to 80 percent national rate.
TLG’s current cross-disability services roster includes the following
- Pregnancy and birth support – Occupational therapy and childbirth educator staff with expertise in the unique health and attitudinal challenges facing mothers with disabilities during pregnancy and birth support and work with the expectant mother and her partner to prepare for both the physical experience of the birth and the practicalities that follow (including securing and learning to use adaptive baby care equipment).
- Parent-child intervention – High-frequency, high-duration, home-based and relationship-based interventions are tailored to families, blending infant mental health, family systems, and parenting education approaches with case management, developmental services, parenting adaptations, and disability resources.
- Evaluation and assessment – Occupational therapists and mental health staff conduct parenting assessments of parents with all categories of disability using observation-based and home-based assessment of parent-child interaction and relationships, and piloting adaptations.
- Developmental assessment and early intervention – Home-based, relationship-based services are provided for infants and young children with delays or disabilities and their parents, with and without disabilities.
- Early Head Start for families with disabilities – Center- and home-based services are provided by early educators and therapists with support from TLG disability specialists in a universally designed center at the Ed Roberts Campus. This is the first EHS that specifically targets families with disability in parents or children.
- Psychotherapy – Provided for individual children who have parents with disabilities or disabilities themselves, and for family units.
- Support groups – Provided for mothers with intellectual disabilities or physical disabilities.
- Playgroups – Provided for parents with intellectual disabilities and their children who have speech and language delays.
- Legal services – Provided for parents with disabilities facing loss of child custody, as well as attorneys, social workers, and others involved in such cases.
- Tutoring and academic scholarships – Provided for the children of parents with disabilities.
- Consultation to early childhood centers – Mental health, developmental, and occupational therapists specializing in disability provide ongoing consultation to numerous centers in the community, many that include children whose parents have disabilities.
- Social media – These include a blog for parents with disabilities, a Facebook page, and a Twitter feed that streams national and international disability legal and policy developments, including those that involve parenting cases.
Thresholds Mothers’ Project, Chicago, Illinois
Founded in 1976, Thresholds Mothers’ Project was one of the nation’s first programs to serve parents with psychiatric disabilities and their families. The project “seeks to stabilize and normalize the family unit and provide a social support network for its members.” To support parents with disabilities, the Mothers’ Project includes three distinct programs: a teen parenting program, a therapeutic nursery, and a Projects for Assistance in Transition from Homelessness (PATH) program.
The teen parenting program generally receives referrals from the state child welfare agency. Participants are mothers who were abused and involved in child welfare as children; mothers are eligible for the program until they reach age 21. The teen parenting program includes transitional living and helps parents apply for and secure benefits, employment, and housing.
The therapeutic nursery is available for the children of parents enrolled in any Thresholds program, as well as community members. Children may attend until age five. The nursery is primarily funded by Chicago public schools, through EI funding.
The PATH program, which is funded by the Substance Abuse and Mental Health Services Administration (SAMHSA), serves mothers who are homeless or on the brink of homelessness. It is an outreach program aimed at helping mothers locate housing and other necessary supports. The program’s Parenting Assessment Team provides ongoing evaluation of the parenting capacity of its members.
The Thresholds Mothers’ Project is nationally known. In 1993, Tipper Gore, President Clinton’s mental health policy advisor, recognized the program as one that “sets an example for the nation to follow” by teaching independent living and parenting skills. Through its programs, Thresholds serves nearly 75 mothers and 90 children annually. According to Marc Fagan, associate director of child and adolescent services, the project’s overarching goal is “maintaining the bond between child and parent, even if the parent does not have custody.” Fagan reports that children are very rarely removed from parents by child welfare while they are receiving supports from Thresholds.
Invisible Children’s Project, Orange County, New York
In 1993, the Mental Health Association (MHA) in Orange County, New York, began an effort to raise awareness of the needs of families in which a parent has a psychiatric disability. The MHA developed the Invisible Children’s Project (ICP), a program that “aims to integrate essential services for these parents, to increase their ability to function as parents and assist them in creating a safe and nurturing environment for their children.”
The objective of ICP is to support parents with psychiatric disabilities in their parenting efforts and to keep the family together. Critical program components include family case management with 24-hour emergency services; affordable housing and financial assistance; respite care for parents; planning for parental hospitalization so children are not placed in foster care; advocacy on behalf of the child with schools, social services, and the courts; parent skills training; support groups for parents; vocational training; and supported education services (e.g., classes and mentoring). Other program features include support during pregnancy and postpartum periods, art therapy with children, and cash for special requests (e.g., toys, camp, and birthday parties).
ICP receives its funding through a variety of funding streams, including local and state dollars from the Department of Mental Health, HHS, HUD, United Way, and private contributions.
Since its inception, ICP has served more than 175 people in New York. In an evaluation conducted by the New York Psychiatric Institute, more than 90 percent of the families served by ICP rated the overall quality of service as good or excellent and would recommend it to a friend. The data demonstrated that the program is particularly effective in helping consumers obtain better housing and improve their parenting skills. Recent internal program evaluations reveal a notable decrease in parental hospitalization and an increase in the ability of participants to hold a job and get off public assistance. Of significant note is the decline in the number of children placed in foster care as a result of the project. ICP is a nationally recognized, award-winning, interagency program that the National Mental Health Association is helping to replicate nationwide.
Family Initiatives at Employment Options, Marlborough, Massachusetts
Family Initiatives, a program of the Employment Options clubhouse in Marlborough, Massachusetts, offers a continuum of four programs for custodial and noncustodial parents with psychiatric disabilities: Family Project, Family Options, Young Parents Support Service, and the Clubhouse Family Legal Support Project (CFLSP).
Family Project offers a variety of supports and services to custodial and noncustodial parents with psychiatric disabilities who are receiving care through the Massachusetts Department of Mental Health. The project is an integral part of the clubhouse; through advocacy, the family generalist staff works with parents to rebuild relationships with their children and empower them to reestablish their identity as parents. Some of the parents involved with the Family Project have lost contact with their children and require legal consultation. The project works closely with the Clubhouse Family Legal Support Project to help parents achieve their goals:
- Parenting recovery supports and skill building – Staff and peers help parents increase their understanding of their children, improve their parenting skills, and build skills and resources to support their recovery.
- Visitation support – Staff work with parents who do not have custody of their children to plan visits that will be developmentally appropriate, interactive, and pleasurable for parents and their children. Staff also provide supervised visitation and transportation to these visits.
- Parent peer support group – Parents meet regularly to discuss the challenges of attending to their own well-being and recovery.
- Liaison with Clubhouse Family Legal Support Project – Staff facilitate contact and communication between parents and attorneys, in support of the parents’ efforts to gain visitation and custodial care.
- Liaison with community – Staff and parents work together to facilitate a better understanding among the parent’s community, including schools, housing, public safety, child welfare, and religious/community groups.
Family Options is a comprehensive program that provides strengths- and community-based care designed to meet the needs of parents with psychiatric disabilities and their children. The program offers family coaching, a wraparound team process, a 24-hour support line, a parent support group, and flexible funding to meet unique family and individual needs. Referrals to Family Options come from both the child- and adult-focused service sectors, with the majority from child welfare. The program is staffed by a director with extensive wraparound experience; three family coaches, each of whom works with a maximum of eight families at a time; a parent peer coordinator; and a consulting research and clinical psychologist.
Young Parents Support Services provides parent coaching and peer mentoring for young pregnant and parenting adults with psychiatric disabilities.
CFLSP offers legal advice and representation for parents who are trying to increase their contact with their children. The project teaches parents how to use their custodial rights and provides statewide training for attorneys on the legal issues facing parents with psychiatric disabilities. CFLSP was established in 1999 to help club members work toward rebuilding their families. The project brought a family law practitioner with experience representing low-income clients to join the Mental Health Legal Advisors Committee (MHLAC) and Employment Options as a full-time project attorney. Working with MHLAC and Employment Options, the attorney provides legal representation to clubhouse members who are at risk of losing custody and all contact with their children.
The project was launched by an attorney who had discovered that these cases were not being taken by legal service agencies, pro se clinics, pro bono attorneys, or private attorneys. Legal service agencies in Massachusetts were unable to provide representation because of limited resources and were therefore forced to decrease their family law staff and caseload to cover only matters that involve domestic violence. For this reason, MHLAC was “the only game in town if you were a male.” In attempting to refer these cases elsewhere, legal services agencies discovered that other agencies were either reluctant or ill-equipped to handle cases involving parents with psychiatric disabilities. Further, legal service agencies had tried to obtain representation for parents with psychiatric disabilities through pro se clinics and private bar referrals. Unfortunately, pro se clinics were not useful for clients with psychiatric disabilities in family law matters. Moreover, most low-income parents with psychiatric disabilities cannot afford private attorneys, and thus rarely receive representation from the private bar. Even pro bono attorneys were reluctant to take these cases, because they “lack specialized training in mental health law, clinical knowledge, and the parenting support services available in Massachusetts.”
Positive Parenting Resource Center at United Arc of Franklin and Hampshire Counties, Greenfield, Massachusetts
The Positive Parenting Resource Center, which was established through an innovation grant from the Massachusetts Department of Mental Retardation, provides services and support to families headed by parents with intellectual or developmental disabilities. The center provides the following services:
- Individualized parent support – Includes home-based parent education, parent skills training, case management, service advocacy and family support.
- Parent education and support groups – Sessions focus on child development, parent/child communication, health and wellness, family literacy, basic household and financial stability, positive discipline and limit setting, safety factors, prevention of abuse and neglect, and access of community resources. Most groups have a target parent population; for example, parents with young children or parents of teens. Groups have educational themes and draw from a primary curriculum such as The Nurturing Parent or The Family Game.
- Supervised visitation – Available to families referred by child protective services whose children are in foster care.
- Intensive structured supported family living – Available to families referred by child protective services who need a broadly supportive environment for reunification of parents and children or to attain stability in family life. The United Arc owns an apartment building with five apartments available for families and two adjacent apartments that house staff offices, group meeting space, and living quarters for an onsite supportive neighbor.
- Mentoring support – Family Friends volunteers are matched with families to provide additional support and guidance to both children and parents.
- Grandparent support – Networking, support groups, and individualized home visits are available to grandparents who have primary responsibility for raising a grandchild.
The Positive Parenting Resource Center is funded through a variety of sources, including state funding from the Department of Children and Families, Children’s Trust Fund, Community Foundation of Western Massachusetts, and private grants. Any family in which the parent is identified as having an intellectual or developmental disability may be referred to the center.
Ashbury House, San Francisco, California
Ashbury House is a residential treatment program in a social rehabilitation model, serving mothers who have mental health treatment needs, frequently with co-occurring substance abuse treatment needs. Ashbury House serves homeless women who have lost custody or are at risk of losing custody of their children owing to their psychiatric disability and who need comprehensive mental health services and parenting education to maintain or regain custody. Onsite day treatment includes parenting education, individual and group counseling, crisis intervention, peer support, activities of daily living, medication support, ambulatory medical support by a nurse practitioner, and referrals to social services, vocational rehabilitation, housing and community treatment. Ashbury House is wheelchair accessible.
When Ashbury House opened in 1995, it was one of the first programs of its kind in the country. Before it opened, mothers were generally not allowed to keep their children with them while in a residential treatment program, and if a mother needed that level of mental health treatment, she was forced to give up her children. Ashbury is a yearlong program in which clients learn to manage their disability and improve their life skills; they also learn parenting skills, well-baby care, and how to identify and develop strategies for times when their mental illness may negatively affect their parenting.
Promising Models for Funding and Structure
This section examines two additional models for funding and structure of successful national programs that serve parents with disabilities and their children.
Family Support 360 Projects
The Family Support 360 initiative is an example of how state parenting support centers could be funded and developed nationally. The specific project discussed, Green Mountain 360, is an example of a promising practice.
Through the Family Support 360 (FS 360) initiative, the Administration on Intellectual and Developmental Disabilities (AIDD)—a program of the Administration for Community Living under HHS—provided “planning and implementation grant opportunities to create one-stop centers to assist the families of individuals with what they phrase as developmental disabilities. In fiscal year 2004, 21 entities were funded for five years to implement Family Support 360 Centers. They were required to be designated as the lead entity for their State/Territory by their Governor and to work in partnership with the developmental disability (DD) network (DD Council, Protection and Advocacy System, and University Center on Developmental Disability), family members, policymakers, and others in their State/Territory. They identified and geared their services to one un-served population and assisted them in locating and navigating public human services agencies, and connecting to private community organizations.” These projects were to be defined by their holistic approach to family units and were to be family-centered and family-directed to the greatest possible extent. They included assessment of the family unit and creation with the family of a family service plan that describes the services the family might access and how to secure them. Families were assisted in securing and using a range of services, such as health care, child care, early intervention, education, employment, marriage education, financial education, transportation, housing, respite care, and assistance in maintaining parental rights. Staff were available to help if the family hit a barrier in the process.
One of the initial grantees focused on families in which a parent had a developmental disability: Green Mountain 360 in Vermont. Green Mountain provided peer navigators with expertise in disability and human services to help participants identify and use preventive and reunification services. Green Mountain worked to ensure that the human services system developed and maintained equitable statewide capacity to deliver collaborative, flexible, coordinated supports that were safe for families who have a parent with a disability; helped parents with disabilities retain custody of their children with appropriate supports; and provided communication support to help parents make relevant facts and wishes known to the court. The model was successful: In the five years the grant ran, Green Mountain serves 750 families. The rate of removal of minor children was less than 5 percent.
None of the current 360 projects fund projects focused on serving families in which parents have disabilities. However, portions of the Green Mountain model have been funded by state legislation to continue acting as a triage point for the intersection of parents with intellectual disabilities and their families and human services agencies in the state. Sage Haven Center, LLC, in Fairfax, Vermont, continues to provide accommodated parenting assessments and evaluations in the context of child welfare cases, with regular recommendations for the use of peer navigators.
Sage Haven is a private mental health counseling practice specializing in intellectual and developmental disabilities. Services include individual, group, and family counseling by therapists skilled in treating individuals with intellectual or developmental disabilities and co-occurring emotional or behavioral disorders; consultation; training; and competence-based parenting assessments(C-BPAs). Sage Haven subcontracts a multidisciplinary team (the Vermont Parent Assessment Team) of doctoral and master’s level psychologists, social workers, counselors, and other qualified professionals (with more than 60 years of combined experience) to conduct the assessments. C-BPAs evaluate parents’ ability to nurture, protect, and meet the changing needs of their children. Family assessment specialists work in partnership with parents and service providers to assess individual parenting needs, while ensuring that parents’ rights are respected and children’s welfare is protected. The information gathered in C-BPAs helps determine the support needed for a parent to be successful and may assist with custody decisions. To conduct C-BPAs, family assessment specialists (1) use nationally recognized tools to evaluate parents’ skills and the factors that have been found to affect parenting; (2) observe parent-child interactions in home and community settings; (3) interview parents to gather social histories and determine the need for support; (4) interview service and support providers; and (5) review records. They take cultural context and diversity into account and use current clinical and research evidence to inform their reports and ensure best practice.
Another successful program is the Vermont Communication Support Project (VCSP), which serves people with disability-related communication barriers that prevent them from fully participating in civil court and administrative proceedings, including those involving parental rights and responsibilities, Child in Need of Services (CHINS), and TPR. A communication support specialist is trained to understand the communication needs of people with learning disabilities, traumatic brain injuries, developmental disabilities, autism spectrum disorders, mental illness, aphasia, and other stroke-related conditions. VCSP began very informally nearly 15 years ago when a public defender in Chittenden County contacted the Disability Law Project to brainstorm about help for a client with intellectual disabilities who had difficulty understanding and communicating in the confusing environment of a court proceeding. The Disability Law Project connected the attorney with a former special educator who was able to help prepare the client and simplify the language and concepts during the proceedings. The proceedings went smoothly for all, the court clerk began calling the Disability Law Project for help with other cases, and several other retired special educators stepped up to help. In 1999, a grant to the Defender General’s Office, combined with a small memorial fund at the Vermont Parent Information Center, provided funds to develop a training curriculum for communication support specialists and staff to administer the project. VCSP was initially housed in the Defender General’s Office. For a while, VCSP operated as an independent project funded by the Vermont Developmental Disabilities Council; eventually it moved to the University of Vermont’s Center on Disability and Community Inclusion. It has been a project of Disability Rights Vermont since June 2008. VCSP has received funding at various times from DOJ, the Vermont Developmental Disabilities Council, and the state of Vermont. Currently, it is supported by grants from DOJ and the state.
The communication support specialists are independent contractors paid by courts and administrative agencies as a necessary accommodation under the ADA. Preparation time with an attorney is paid for by the attorney. The role of the specialist is to assist people with cognitive disabilities who might otherwise be confused by proceedings or who have difficulty expressing themselves by preparing them for proceedings, simplifying language and abstract concepts, checking for understanding, using alternative means of communication, and alerting the judge or hearing officer if the client does not understand or needs a break. The communication support specialist’s role is that of neutral communication facilitator, analogous to a sign language interpreter for the deaf.
Between January 1, 2008, and June 30, 2011, VCSP received 253 requests for services; 206 became active cases, and 47 did not qualify for services or were unable to document their disability for a variety of reasons. Many, if not most, of these cases involved numerous hearings or meetings. VCSP was involved in at least 497 hearings, meetings, and mediations between January 1, 2008, and June 30, 2011.
Healthy Start, Australia
The idea of a national system of interdisciplinary organizations to build capacity and directly provide support to parents with disabilities is not unprecedented. International research demonstrating limited system capacity in Australia to support parents with intellectual disabilities triggered the development of a national—and replicable—response.
The Australian government funded a capacity-building model known as Healthy Start: A National Strategy for Children of Parents with Intellectual Disabilities. Healthy Start is an Early Childhood–Invest to Grow initiative, funded under the Stronger Families and Communities Strategy. “Healthy Start is an organizational-level intervention to reduce risk and promote a healthy start to life for children of parents with intellectual disabilities. The focus of the intervention is on the limited capacity of the service system to deliver evidence-based practice to these parents. Healthy Start aims to build system capacity by developing local area networks developed and led by local champions, implementing a national technology-based network, and by actively disseminating knowledge and innovation.” The components of Healthy Start are adaptation to community context, peer networking, access to knowledge and innovation, leadership and managerial support, and building capacity. The designers of the system note that “innovative, cross-disciplinary, and intersectoral practitioner networks are at the heart of this capacity-building model. These networks bridge the gap between research knowledge and practitioner knowledge as a basis for planning and coordinating local service development.”
So far, 69 learning hubs have been established, covering every Australian state and territory. The information-rich Web site is available to the participating local agencies and professionals. A graduate-level unit of study on parents with intellectual disabilities is open to those facilitating hubs, as well as two evidence-based parenting programs, involving workshop training of 464 practitioners throughout Australia. “Local learning hubs are now implementing a range of innovative plans to build capacity to support parents with intellectual disabilities and their young children in their own local areas, bringing together knowledge from research with knowledge of local area needs.”
Throughout the United States, agencies have developed innovative, evidence-based programs that support parents with disabilities and the well-being of their children. Yet a gap still exists between the research on what needs to be provided to these families to support them, the excellent work of a few programs, and the vast number of families with no access to support.
There is an urgent need for a national approach like the Healthy Start National Strategy in Australia. Further investigation is needed into how the United States could adopt a more sustained and robust version of the 360 project funding and development model, starting with demonstration project funding in 10–12 states. The development of collaborative projects and agencies that reflect the best of the promising practices highlighted here, with multidisciplinary and cross-disability features, is our best hope for creating capacity to meet the needs of this population of parents and their children in a consistent and comprehensive manner.