Chapter 17: Findings and Recommendations

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The foregoing chapters have examined the experiences of parents with disabilities and their families. Research and anecdotal evidence shared by parents with disabilities demonstrate the significant, and systemic, barriers facing people with disabilities wanting to create and maintain families. Further, a review of promising practices and supports demonstrate the potential of these families when provided necessary services. Finally, an analysis of state and federal legislation of interest revealed ways that parenting rights can be protected. This chapter sets forth major findings and concrete recommendations flowing from the study and charts a strategy for the future. If these recommendations are followed, people with disabilities will be fully able to possess their fundamental right to create and maintain families.FINDING 1: There are few accurate and comprehensive sources of information on the prevalence of parents with disabilities.Despite increasing numbers of people with disabilities creating families, there is a paucity of data and research on the prevalence of parents with disabilities, their needs, and their experiences. Reasons for this lack of information include the lack of attention paid to the needs and experiences of parents with disabilities and their families, the dearth of administrative and research data on parents with disabilities, and the lack of funding for research. Adequate policy development and program planning to address the issues and meet the needs of parents with disabilities and their children cannot occur without accurate prevalence data and more detailed information about the circumstances, goals, and needs of these families.RecommendationsThe Administration should issue an Executive Order establishing an Interagency Committee on Parents with Disabilities. NCD recommends that the Administration issue an Executive Order establishing an Interagency Committee on Parents with Disabilities. Members of this committee should include NCD; the Department Health and Human Services (HHS), specifically the Administration for Community Living (ACL), including the Administration on Intellectual and Developmental Disabilities (AIDD) and the Administration for Children and Families (ACF); Department of Labor (DOL), specifically the Office of Disability Employment Policy (ODEP) and Employment and Training Administration (ETA); Department of Justice (DOJ); Substance Abuse and Mental Health Services Administration (SAMHSA); Social Security Administration (SSA); Department of Agriculture (USDA); Department of Transportation (DOT); Centers for Medicare and Medicaid Services (CMS); Department of Housing and Urban Development (HUD); National Institute for Disability and Rehabilitation Research (NIDRR); Department of Education (ED); Department of Veterans Affairs (VA); and Rehabilitation Services Administration (RSA).Congress, the Administration, and federal agencies should gather effective data on parents with disabilities and their families. NCD recommends that Congress and the Administration develop initiatives to produce effective and comprehensive data on parents with disabilities and their families. Federal agencies—including but not limited to the Federal Interagency Forum on Child and Family Statistics, HHS, SAMHSA, SSA, USDA, CMS, VA, and HUD—should collect data on the parents with disabilities and the families they serve. The Centers for Disease Control and Prevention (CDC) should conduct a surveillance survey to determine the prevalence of parents with disabilities. Similarly, key systems that serve people with disabilities—such as state disability and veterans agencies, Centers for Independent Living, disability and mental health providers, and paratransit agencies—must collect data on the parental status of their clients/consumers.Congress, the Administration, and federal agencies should fund research on parents with disabilities and their families. NCD recommends that Congress appropriate funding specifically for research on parents with disabilities and their families. Further, NCD recommends that federal agencies such as the Interagency Committee on Disability Research (ICDR), AIDD, the National Institutes of Health (NIH), and SAMHSA emulate and collaborate with NIDRR in dedicating funding to research on parents with disabilities and their families, focusing on their needs and how best to support them. This will necessarily involve demonstration projects and evaluative service models.FINDING 2: The child welfare system is ill-equipped to support parents with disabilities and their families, resulting in disproportionately high rates of involvement with child welfare services and devastatingly high rates of parents with disabilities losing their parental rights.Parents with disabilities and their children are overly, and often inappropriately, referred to child welfare services and, once involved, are permanently separated at disproportionately high rates. Parents with disabilities have their children removed at disproportionately high rates owing to a number of factors, including (1) state statutes that include disability as grounds for termination of parental rights (TPR); (2) the disparate impact of certain provisions of the Adoption and Safe Families Act of 1997 (ASFA); (3) perceived limits on the application of the Americans with Disabilities Act (ADA), especially at the termination phase; (4) bias, speculation, and the “unfit parent” standard; and (5) a lack of training in relevant systems regarding parents with disabilities.RecommendationsStates must eliminate disability from their statutes as grounds for termination of parental rights and enact legislation that ensures the rights of parents with disabilities.NCD recommends that states eliminate disability from their dependency statutes as grounds for TPR. Further, NCD recommends that all states enact legislation, in accordance with the language set forth in Appendix C of this report, to ensure the rights of parents with disabilities.Congress should address the disparate treatment experienced by parents with disabilities by adding specific protections for parents with disabilities in the Adoption and Safe Families Act. NCD recommends that Congress amend ASFA by adding specific protections for parents with disabilities. Specifically, language must be added to the (1) “15/22” rule, allowing for additional time for parents with disabilities; and (2) the “reasonable efforts” provision to keep children with their parents, both to prevent or eliminate the need for removal of the child from the family and to make it possible for the child to return to the family following removal by eliminating the bypass provision (which allows states to bypass efforts to reunify families in certain situations) as applied to parents with disabilities and ensuring that child welfare agencies comply with the law and make reasonable efforts to prevent the removal of children and provide reunification services for parents with disabilities and their families.Congress should address the disparate treatment experienced by parents with disabilities resulting from the focus on permanency by shifting funding priorities at the federal level so that states have a greater incentive to provide prevention and preservation services. NCD recommends that Congress shift funding priorities at the federal level so that states have a greater incentive to provide services to families while the children are maintained in the home, as research has shown that in-home services are most effective, particularly for people with disabilities.DOJ, in collaboration with HHS, should issue guidance to states (specifically child welfare agencies and dependency courts) on their legal obligations pursuant to the ADA. NCD recommends that DOJ, in collaboration with HHS, issue guidance to states (specifically child welfare agencies and dependency courts) reinforcing their legal obligations pursuant to the ADA. Such guidance must address (1) the applicability of the ADA to TPR proceedings; (2) the duty of child welfare agencies and dependency courts to provide reasonable accommodations to parents with disabilities; and (3) presumptions of parental incompetence based on disability violate the ADA.HHS and DOJ should gather data on parents with disabilities and their interaction with child welfare and dependency court systems.NCD recommends that HHS and DOJ collect annual data on parents with disabilities and their interaction with child welfare agencies and dependency courts. Such data must include (1) disability, (2) exact involvement, (3) services and reasonable accommodations provided, and (4) outcome.DOJ, in collaboration with HHS, must investigate all allegations of child welfare agencies or dependency courts that violate federal disability laws and enforce them as appropriate.NCD recommends that DOJ include such matters in its enforcement priorities; violations of parental rights must be considered violations of civil rights. HHS (which has institutional expertise in the functioning of the child welfare system and courts) and DOJ’s Civil Rights Division should collaborate to enrich investigations into alleged violations of the Rehabilitation Act or the ADA by these entities with respect to parents with disabilities and their children. This could be effected through a memorandum of understanding establishing a synergistic partnership (such as the interagency agreement between the DOJ Civil Rights Division and the Department of Transportation) or the creation of a special section integrating expertise from the two departments (such as the Housing and Civil Enforcement Section of the DOJ Civil Rights Division).The HHS Children’s Bureau should collaborate with NIDRR in funding and directing NIDRR’s National Center for Parents with Disabilities and Their Families. NCD recommends that the HHS Children’s Bureau collaborate with NIDRR in funding and directing NIDRR’s National Center for Parents with Disabilities and Their Families. NIDRR has funded such centers since 1990, with regular competition for awards every three to five years. The added funding and direction would allow the National Center to develop additional knowledge and provide additional technical assistance to federal, state, and local agencies and tribes to improve outcomes for families with parents with disabilities in the child welfare and family court systems.FINDING 3: Parents with disabilities who are engaged in custody or visitation disputes in the family law system regularly encounter discriminatory practices.Parents with disabilities who are seeking or defending custody or visitation rights often encounter a family law system that is riddled with practices that discriminate against them. Such practices include (1) a system that is pervaded with bias; (2) inconsistent state laws, many that overtly discriminate against parents with disabilities, others that fail to protect them from unsupported allegations that they are unfit or create a detrimental impact on their children solely on the basis of presumption or speculation regarding the parental disability; and (3) a lack of expertise or even familiarity regarding parents with disabilities and their children.RecommendationsFamily court professionals—including judges, attorneys, and evaluation personnel—should receive training related to parenting with a disability. NCD recommends that all family court professionals—including judges, attorneys, and evaluation personnel— receive training on a regular basis on parents with disabilities and their children. This training should be a mandatory component of continuing education requirements for such professionals.DOJ should issue guidance to family courts on their legal obligations pursuant to the ADA. NCD recommends that DOJ issue guidance to family courts, reinforcing their legal obligations pursuant to the ADA. Such guidance must address (1) the applicability of the ADA to custody and visitation proceedings, (2) the courts’ duty to provide reasonable accommodations to parents with disabilities, and (3) presumptions of parental incompetence based on disability that violate the ADA.States must modify their custody and visitation statutes to eliminate language that discriminates against parents with disabilities. NCD recommends that states eliminate parental disability as a factor that courts can consider when determining the “best interest of the child” in custody and visitation disputes. Further, NCD recommends that all states enact legislation, in accordance with the language set forth in Appendix C of this report, to ensure the rights of parents with disabilities.FINDING 4: Parents with disabilities who are involved in dependency or family proceedings regularly face evidence regarding their parental fitness that is developed using inappropriate and unadapted parenting assessments. Resources are lacking to provide adapted services and adaptive parenting equipment, and to teach adapted parenting techniques.Parents with disabilities who are involved in dependency or family proceedings regularly face (1) evidence regarding their parental fitness that is developed using inappropriate and unadapted parenting assessments and (2) a national dearth of resources to provide adapted services and adaptive parenting equipment, and to teach adapted parenting techniques. Even when such resources exist, dependency and family courts do not often use them.RecommendationsState statutes, rules of court, and professional standards must require that parenting assessments be fully accessible to parents with disabilities. NCD recommends that state statutes, rules of court, and professional standards must require evaluators to thoroughly investigate whether they are in compliance with the 2012 American Psychological Associations Guidelines for Assessment of and Intervention With Persons With Disabilities, and whether they need to modify the evaluation process or incorporate parenting adaptations to provide a more valid, reliable assessment of a parent’s capacities in the context of child welfare and child custody cases. Such standards must require adapted naturalistic observations—for instance, in the parent’s modified home setting rather than in an unfamiliar setting—instead of leaving the venue for observation open to the evaluator’s discretion; must require explicit evidentiary support for statements made about a parent’s capacity; and must prohibit the use of speculation and global diagnostic or disability labels as a ground for limiting custody or visitation. Professional standards must address the problem of using standardized testing to assess parenting capacity in parents with disabilities. Further, evaluators must use tools that have been developed specifically to assess the capabilities and needs of parents with disabilities, particularly intellectual and developmental disabilities, and should include existing and natural supports in the assessment.States must mandate training for custody evaluators on parents with disabilities and their children. NCD recommends that state legislatures mandate training for current custody evaluators to teach them the skills necessary to conduct competent disability-related custody evaluations. Such training must include valid methods that directly evaluate parenting knowledge and skills, and must consider the role of adaptations or environmental factors that can impede or support positive outcomes.CMS must expand the definition of durable medical equipment (DME) to include adaptive parenting equipment. NCD recommends that CMS expand its definition of DME to include adaptive parenting equipment for parents with disabilities who receive Medicaid or Medicare.States should establish adaptive parenting equipment reuse and loan programs. NCD recommends that states establish adaptive parenting equipment reuse and loan programs similar to the programs states now have pursuant to the Assistive Technology Act of 2004.FINDING 5: Prospective adoptive parents with disabilities face significant barriers to adopting children, both domestically and internationally.Despite a growing need for adoptive parents, people with disabilities regularly encounter discriminatory practices that eliminate them solely because of their disabilities.RecommendationsDOJ should issue guidance to domestic public and private adoption agencies, as well as private adoption agencies engaging in international adoption on U.S. soil, regarding their legal obligations pursuant to the ADA.NCD recommends that DOJ issue guidance to domestic public and private adoption agencies, as well as private adoption agencies engaging in international adoption on U.S. soil, regarding their legal obligations pursuant to the ADA. Such guidance must address the agencies’ duty to provide reasonable accommodations to prospective adoptive parents with disabilities throughout all phases of the process and state that presumptions of parental incompetence based on disability violate the ADA.DOJ must investigate all reported allegations of public and private adoption agencies violating the ADA and enforce the law as appropriate. NCD recommends that DOJ investigate all reported allegations of domestic public and private adoption agencies violating the ADA and enforce the law as appropriate. Discrimination in the adoption process against prospective parents with disabilities must be considered a violation of civil rights.The Department of State should dedicate resources to expanding the rights of people with disabilities to adopt internationally. NCD recommends that the Office of Children’s Issues (CI), part of the Bureau of Consular Affairs at the Department of State, and the Department of State’s Office of the Special Advisor for International Disability Rights work together to expand the rights of people with disabilities to adopt internationally, particularly from those nations that have ratified the Hague Convention. Such work will require educating state and private adoption agencies in other countries on the capacity of people with disabilities to parent, with or without adaptive parenting equipment, techniques, or supportive services.Adoption agency staff must undergo training on how to fully assess prospective parents with disabilities. NCD recommends that adoption agency staff who are responsible for evaluating prospective adoptive parents or conducting home studies to assess fitness for adoptive placement be provided with training regarding parents with disabilities, adaptive equipment, techniques, and supportive services.FINDING 6: People with disabilities face significant barriers to receiving assisted reproductive technologies (ART), despite its importance for many people with disabilities who want to procreate.ART can enable many people with disabilities to procreate who would otherwise be unable to do so. However, many people with disabilities face significant, and sometimes insurmountable, barriers to receiving ART. ART providers regularly engage in discriminatory practices against people with disabilities, and the growing costs of ART, combined with the limited insurance coverage for these treatments, leave many people with disabilities unable to afford the treatment.RecommendationsDOJ, in collaboration with HHS, should issue guidance to ART providers on their legal obligations pursuant to the ADA and the Rehabilitation Act.NCD recommends that DOJ, in collaboration with HHS, issue guidance to ART providers regarding their legal obligations pursuant to the ADA and the Rehabilitation Act. Such guidance must address the providers’ duty to provide access and reasonable accommodations throughout all phases of the process and must state that presumptions of parenting ability based on disability violate the ADA.DOJ, in collaboration with HHS, must investigate all reported allegations of ART providers violating the ADA and the Rehabilitation Act, and enforce the law as appropriate. NCD recommends that DOJ investigate all reported allegations of ADA and Rehabilitation Act violations by ART providers and enforce them as appropriate.HHS must issue guidance to ART providers on treating patients with disabilities and make training available on parenting capacity. NCD recommends that HHS—collectively the ACL, CDC, NIH, Office for Civil Rights, and the Office of the Surgeon General—issue guidance to ART providers on treating patients with disabilities and their legal obligations to provide access and reasonable accommodations. ART office staff responsible for evaluating prospective parents to assess fitness should be provided with training regarding parents with diverse disabilities, adaptive parenting equipment and techniques, and supportive services.ART professional organizations must issue guidance to their members on treating patients with disabilities. NCD recommends that ART professional organizations, such as the Society for Reproductive Technologies and the American Society for Reproductive Medicine, issue guidance to ART providers on treating patients with disabilities and their legal obligations to provide access and reasonable accommodations.Medicaid and Medicare must fund ART for people with disabilities. NCD recommends that CMS identify and implement mechanisms to pay for ART for Medicaid and Medicare beneficiaries with disabilities.FINDING 7: Personal assistance services (PAS) are a crucial support for many people with disabilities but usually may not be used to assist them with their parenting activities.PAS are a crucial support for more than 13.2 million people with disabilities. They help people with disabilities with activities of daily living (ADLs, such as eating, bathing, dressing, and toileting) and with instrumental activities of daily living (IADLs, such as grocery shopping, cooking, and cleaning). Cost is the most significant barrier for parents with disabilities who need PAS. They face significant challenges because no government program provides them with assistance in caring for their nondisabled children. PAS are considered beyond the purview of assistance that may be provided as it does not assist the persons with disabilities themselves. Other Western nations provide this service to consumers, funding and implementing the program in a variety of ways. PAS oriented toward parenting tasks would greatly assist parents with disabilities and their families. The benefits of PAS go beyond improving quality of life—they have also been found to be cost-effective.RecommendationCMS must expand its definition of ADLs to include parenting activities. NCD recommends that CMS expand its definition of ADLs to include parenting activities so that funded PAS can help consumers with their parenting responsibilities.FINDING 8: Parents with disabilities face significant barriers to obtaining accessible, affordable, and appropriate housing for their families.Having a home is crucial to creating and maintaining a family. However, many parents with disabilities face significant barriers in securing accessible, affordable, and appropriate housing.RecommendationsHUD must require that public housing agencies (PHAs) provide at least 50 percent of their accessible units in family housing developments.NCD recommends that HUD require PHAs to provide at least 50 percent of their accessible units in family housing developments. Such units must comply with all relevant federal disability access requirements and must include the same family-oriented space and appointments found in other units.HUD should establish a national modification fund to pay for reasonable modifications to make private units accessible. NCD recommends that HUD develop a national modification fund to pay for reasonable modifications to make private units accessible for parents with disabilities and their families.HUD should develop a program for parents with disabilities who are first-time homeowners. NCD recommends that HUD develop a program for parents with disabilities who are first-time homeowners. This program should include counseling and low-interest loans.FINDING 9: Many parents with disabilities face barriers to traveling with their families using paratransit services.Transportation affects all areas of the lives of parents with disabilities and their families—from child care to housing to participating in a child’s education and meeting a child’s medical needs. Nevertheless, it remains one of the most challenging areas for many parents with disabilities and their families. Paratransit services—a support used by many parents with disabilities—have many barriers related to parents traveling with their families.RecommendationThe Department of Transportation must issue guidance to paratransit providers on their legal obligations to transport parents with disabilities and their families to support the successful execution of parenting and employment roles by people with disabilities. NCD recommends that DOT issue guidance to paratransit providers that reflects its findings in Letter of Findings for FTA Complaint #99096 regarding their obligation to facilitate the use of the system by parents with disabilities and their children without additional charges or discriminatory conditions.FINDING 10: Parents with disabilities have significantly less income and more frequently receive public benefits.The financial status of parents with disabilities and their families is bleak. In fact, the most significant difference between parents with disabilities and parents without disabilities is the economic difference. Parents with disabilities are more likely to receive public benefits. A recent survey found that 52 percent of parents with disabilities receive SSI, and a substantial number of parents with disabilities and their families receive SSDI, SNAP, and TANF. Many parents with disabilities find that these programs do not adequately meet their families’ needs.RecommendationsSSA must explore ways to serve SSI and SSDI beneficiaries who are parents more effectively. NCD recommends that SSA begin an exploratory project to determine how to serve SSI and SSDI beneficiaries more effectively, focusing on ways to increase financial assistance to parents with disabilities and their families.The HHS Administration for Children and Families (ACF) must provide additional supports to parents with disabilities who receive TANF. Such efforts will require collaboration with the Rehabilitation Services Administration (RSA) and state vocational rehabilitation agencies. NCD recommends that ACF provide additional supports to parents with disabilities who receive TANF. Pursuant to the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA), parents who receive TANF must work a specific number of hours (determined by the age of their children). PRWORA also imposes a five-year lifetime limit on assistance. Without appropriate family and work supports to overcome barriers to employment, parents with disabilities, especially single mothers, may be unable to comply with the PRWORA/TANF regulations, resulting in a loss of benefits to families. Specifically, work requirements do not consider disabilities as a barrier to work. Low-paying work and lack of job training programs for people with disabilities are common obstacles to employment, and people with disabilities face significant discrimination in the hiring process, further hindering their ability to comply with the work requirements. Finally, some parents with disabilities—such as those with intellectua l and developmental disabilities—may need long-term employment support, such as career planning and training. ACF must provide support to parents with disabilities who receive TANF, including job training, child care, and transportation. Such efforts will require collaboration with RSA, DOL, ODEP, ETA, and state vocational rehabilitation agencies.FINDING 11: People with disabilities, especially women, face significant barriers to receiving proper reproductive health care.Proper health care, especially reproductive health care, is crucial for people who want to create and maintain families. People with disabilities, particularly women, face significant barriers to receiving accessible, affordable, and appropriate health care.RecommendationsThe Agency for Healthcare Research and Quality (AHRQ), within its mandate to undertake research on priority populations, should promote research that clearly identifies the various barriers encountered by women with disabilities who are seeking reproductive health care. NCD recommends that AHRQ, within its mandate to undertake research on priority populations, promote research that clearly identifies the various barriers encountered by women with disabilities who are seeking reproductive health care. Such research would help disability health policy researchers and other stakeholders to paint an accurate picture of, for example, the extent to which reproductive health care technologies, facilities, and equipment remain inaccessible to women with disabilities, and would bolster efforts to effect change.Medical Education (LCME) should convene a workgroup charged with identifying specific disability competencies that should be required of health care professionals before they graduate from medical and residency training programs, and should translate these competencies into specific course recommendations that can be adopted by medical training programs. NCD recommends that AAMC and LCME convene a workgroup charged with identifying specific disability competencies that should be required of health care professionals before they graduate from medical and residency training programs, and should translate these competencies into specific course recommendations that can be adopted by medical training programs. Competencies should include the core knowledge and skills required to provide appropriate health care to people with diverse disabilities, as well as general awareness of reproductive health care issues and concerns of women with disabilities. Such training should also address parenting with a disability.DOJ, in collaboration with HHS, must increase its monitoring and enforcement of the ADA and Section 504 of the Rehabilitation Act for health care facilities and programs. NCD recommends that DOJ, in collaboration with HHS, increase its monitoring and enforcement of the ADA and Section 504 of the Rehabilitation Act for health care facilities and programs. DOJ must focus additional resources on compliance monitoring and investigation of Title III complaints concerning programmatic access violations of the ADA and Section 504 by health care providers.CMS must identify and implement mechanisms to pay for comprehensive preconception care for Medicaid and Medicare beneficiaries with disabilities. NCD recommends that CMS identify and implement mechanisms to pay for comprehensive preconception care for Medicaid and Medicare beneficiaries with disabilities.FINDING 12: Parents and prospective parents with disabilities face a significant lack of peer supports.The importance of peer supports for parents and prospective parents with disabilities is significant because of the limited information that is available on parenting with a disability. Parents with disabilities often lack positive parenting role models. Moreover, social isolation is a significant issue for many parents with disabilities, particularly parents with intellectual and developmental disabilities, owing to learning difficulties, transportation challenges, and discrimination by nondisabled parents. Peer support networks can be easily developed or expanded at a minimal cost and would be supportive for many parents.RecommendationCongress should appropriate funding to establish a national parenting network for parents with disabilities.NCD recommends that Congress appropriate funding to establish a national parenting network for parents with disabilities. A primary national network should include peer staffing, provide peer-to-peer links, gather information, and provide links to other networking efforts, including those in proposed state sites. The network should maintain an accessible Web site and a “warm line” (during business hours) with cross-disability, legal, and crisis intervention expertise. Proposed state sites should include peer staffing and peer-to-peer networking as well as links to the national network. State sites could also maintain an accessible Web site and warm lines with cross-disability and crisis intervention expertise and links to resources in their regions. Additionally, peer support groups could be located in independent living centers and in programs that specialize in parents with disabilities or deafness. These local parent support groups could provide the ongoing peer connections that are important to alleviate isolation in communities. Collaboration among the national, state, and local services—including training and dissemination of information—should be a priority.FINDING 13: Social service providers regularly overlook the parenting role of their consumers.Disability, mental health, child welfare, housing, transportation, and other service providers play a significant role in the lives of many people with disabilities. The services provided by these agencies typically overlook the parenting needs of the consumer or client. In fact, research demonstrates that the majority of providers have no idea which of their clients are parents.RecommendationsService providers must gather data on the parenting status of the people they serve. NCD recommends that service providers under the authority of the Department of Education, Equal Employment Opportunity Commission, HHS, HUD, Department of the Interior, DOJ, and DOT gather and report annual data on the parenting status of the people with disabilities they serve through state and federally administered programs that include this population.States must develop and implement mechanisms that support integrated, family-centered, strengths-based care for parents with disabilities and their children. NCD recommends that states develop and implement mechanisms to support integrated, family-centered, strengths-based care for parents with disabilities and their children. Agencies and service providers that work with parents and their families need to communicate and coordinate with each other. Coordination across agencies should facilitate the provision of more appropriate services in a more cost-effective fashion. Further, funding for adult and child services must be family-centered and not siloed. This will require a reorganization of the administration and funding of disability services to support the system’s capacity to respond to family needs whether the “identified client” is the adult or the child, and encourage a “family wraparound approach.” States will have to modify interagency agreements and vendor contracts to permit the inclusion of language and expectations for integrated, family-centered, strengths-based care for parents with disabilities and their children.FINDING 14: Formal IDEA Part C Early Intervention (EI) programs and other non-Part C early intervention and prevention model programs are an appropriate service option for many children of parents with disabilities.Early intervention and prevention model programs have the potential to fully accommodate parents with disabilities; thus, efforts must be made to ensure that parents with disabilities and their families are considered for services.RecommendationThe Department of Education and HHS must identify and implement mechanisms for Part C Early Intervention programs, other early intervention and prevention model programs, and Early Head Start to adequately serve the needs of parents with disabilities and their families. NCD recommends that the Department of Education and HHS identify and implement mechanisms for early intervention and prevention programs, including Early Head Start and Head Start, to serve the needs of parents with disabilities and their families. Further, early intervention and prevention model program service providers require education about the needs of parents with disabilities and their families, including how to remediate barriers to full participation in services.FINDING 15: Parents with disabilities involved in dependency or family law proceedings face significant barriers to retaining effective and affordable legal representation.Parents with disabilities face significant barriers to retaining effective and affordable legal representation for dependency and family law proceedings. Many attorneys lack the skills and experience necessary to meet the needs of parents with disabilities. Parents with disabilities are often represented by court-appointed legal representatives who typically have excessive caseloads and little if any training in disability. Research demonstrates that attorneys who represent parents with disabilities in these matters often fail to represent the parents’ best interests; they may harbor stereotypes about parents with disabilities that can reinforce their impression that such cases are unwinnable, and many fail to understand the implications of the ADA in these such cases.RecommendationProtection and Advocacy (P&A) agencies must establish parenting rights as a formal priority, and funding must be appropriated accordingly. NCD recommends that P&A agencies establish protection of custody and parenting rights as a formal national priority. To that end, Congress should establish and authorize additional funding for P&A systems nationally to meet the legal needs of parents with disabilities and their children in child welfare and child custody cases.FINDING 16: Centers for Independent Living (CILs), with appropriate training, can provide services to parents with disabilities.Given the breadth and importance of CILs and the supports they provide, with training they have the potential to participate in the support of parents with disabilities, especially to advocate regarding transportation, housing, financial advocacy, and assistive technology issues, and to offer parent support groups.RecommendationCILs must make serving the needs of parents with disabilities a national priority, and funding must be appropriated accordingly. NCD recommends that CILs make serving the needs of parents with disabilities a national priority. To that end, Congress and RSA must appropriate additional funding to support this unmet need.FINDING 17: 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 across the nation; they must be replicated nationally to provide consistent capacity to support parents with disabilities and their children.Programs that serve the needs of parents with disabilities remain 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 across the nation. Several programs show promise, long-term sustainable impact, and the potential for replication. Generally, they are small, local programs that are part of larger disability services organizations. The programs, for the most part, are specific disability focused, meaning they provide services to parents with a certain disability (e.g., intellectual disabilities or psychiatric disabilities) but not cross-disability. Despite their small size and limited focus, these programs show enormous potential for serving parents with disabilities. With greater funding, programs similar to those discussed in this report can grow and develop nationwide, and adequately serve a currently underserved segment of the United States: parents with disabilitie s and their families. Additional funding will enable these programs to create systems that can consistently support families proactively rather than approaching intervention through child removal and other punitive measures.RecommendationsCongress, the Administration, and federal agencies should fund the development of state multidisciplinary teams (MDTs) to support parents with disabilities and their children. NCD recommends that multidisciplinary programs be established in each state. Moreover, funding must be available for MDTs to train and facilitate collaboration among relevant professional communities, systems, and organizations to increase regional capacity to serve parents with disabilities and their families. Further investigation is needed into how to use a more sustained and robust version of the 360 Project funding and development model, as well as requests for proposals, to achieve this goal preliminarily in 10–12 states while working toward a national system akin to the Healthy Start system in Australia. Ultimately, these projects should reflect the best of the promising practices highlighted here, with multidisciplinary, cross-disability and infant mental health features to maximize the well-being of children with parents who have disabilities.Congress, the Administration, and federal agencies should fund research to analyze existing policies, guidelines, performance standards, and data collection practices of national organizations serving parents with disabilities and their families. NCD recommends that Congress, the Administration, and federal agencies fund research specifically to analyze the existing policies, guidelines, performance standards, and data collection practices of national organizations serving parents with disabilities and their families.FINDING 18: The impact of disability on the integrity of American Indian/Alaskan Native (AI/AN) families has been utterly neglected by professionals in the fields of law, policy, and research.This issue has been neglected despite these communities having twice the disability rate of the general population and a history of government-sponsored removal of their children so severe that it prompted the creation of the Indian Child Welfare Act (ICWA).RecommendationsThe Health and Human Services Administration for Native Americans, ACF Native Affairs Work Group, and Intra-Departmental Council on Native American Affairs member agencies should create a task force to investigate and secure funding for research concerning the impact of disability on familial integrity in Indian Country.NCD recommends that these interrelated entities coordinate to create a task force that could investigate the impact of parental and extended family caregiver disability and its associated legal and social implications for preserving AI/AN families; identify the barriers to conducting research with this population; and procure funding for such research. In many child welfare cases involving Native children, the parents have disabilities; the inability or unwillingness of child welfare systems to meaningfully accommodate these families represents an end-run around ICWA, defeating the spirit and the power of the legislation at a time of great peril for AI/AN communities.Pursuant to §805 of the Native Americans Program Act of 1975, this same task force should procure funding for pilot projects to develop supports for AI/AN parents and extended family caregivers with disabilities and thereby support family integrity in Indian Country. NCD recommends that these interrelated entities coordinate to create a research task force that can investigate how best to develop the capacity to deliver the supports AI/AN parents and extended family caregivers require to care for their children and prevent entry into the child welfare system. These supports should be delivered through existing tribal and urban Indian community programs or by developing new programs. The community supports that can prevent entry into the child welfare system or can support positive outcomes in these cases are not often present in reservation or urban Indian communities. Funding should be procured for a cross-disability, multidisciplinary model program similar to the AFC 360 initiative process to allow reservation and urban Indian communities to maximize their cultural and social relevance and take advantage of their deep understanding of the functioning of their own government and social service delivery systems.Grants and funding should be made available under the Indian Tribal Justice Technical and Legal Assistance Act of 2000 to support technical assistance and training for tribal courts that focuses on parents with disabilities and child welfare and custody cases.NCD recommends that the Bureau of Justice Assistance, as part of DOJ’s Indian Country Law Enforcement Initiative, create and administer grants to support the development and implementation of tribal legal services training and technical assistance to the court programs to enhance understanding in those tribal judicial systems regarding the capacity of parent and extended family caregivers with disabilities to safely and successfully care for minor children and the interplay of ADA and ICWA cases in state court proceedings involving their tribal citizens. This is important not only to support nonbiased outcomes in tribal courts, but to ensure that, where possible, they accept jurisdiction in cases where discrimination is occurring in state courts or have sufficient facility with this issue to withhold endorsement of “active efforts” by state child welfare entities where accommodation has not been provided. Existing disability and existing Native American child welfare organizations (including tribally administered organizations) should be encouraged to collaborate in submitting requests for proposals and developing projects to be funded. Existing Native American disability organizations can provide technical information and knowledge regarding parents with disabilities and how to support them in their own communities; outreach for RFPs should be directed to them. Long-standing organizations such as the Native American Independent Living Services (which serves AI/AN people in New Mexico) and the Native American Disability Law Center (which works specifically with the tribal communities in the Southwest) represent different types of Native American disability programs and are well-positioned to assist both reservation and urban Indian communities.FINDING 19: Federal legislation, similar to the Indian Child Welfare Act, must be enacted to address the systemically disparate treatment faced by parents with disabilities throughout the country.To fully protect the rights of parents with disabilities, federal legislation akin to the ICWA must be enacted. While the ICWA is clearly not aimed at the disability community, the impetus for the ICWA arose from circumstances similar to those surrounding families with parents who have disabilities. Both Native Americans and people with disabilities are historically oppressed minorities who have been denied civil and human rights in this country. Both groups were systemically isolated from other sectors of society until midway through the last century. Both groups suffer extreme levels of poverty, and little is understood about their cultures, leading to stereotyping and discrimination. Most important, both groups have been subjected to involuntary sterilization programs and massive removals of their children. Lack of knowledge about the culture of Native American people and how they parent is very similar to lack of knowledge about the culture, adaptive equipment, supportive services, and strengths of the disability community and how people with disabilities parent. Because of this and the other similarities between the causes of custody loss in the two communities—such as poverty, illiteracy, bias, and discrimination—portions of the ICWA that provide remedy for the Native American community should be borrowed to strengthen new legislation to protect the children of parents with disabilities.RecommendationCongress should address the disparate treatment experienced by parents with disabilities through legislation similar to the ICWA that will protect the rights of parents with disabilities and their families. NCD recommends that Congress enact legislation similar to the ICWA, in accordance with the language set forth in Appendix C of this report, to protect the rights of parents with disabilities. Alternatively, legislative amendment of the ADA and other relevant federal acts governing child welfare, child custody, adoption, and assisted reproductive technologies will be necessary to advance the intention of the ADA at the national level.FINDING 20: The United Nations Convention on the Rights of Persons with Disabilities (CRPD) reinforces the rights of people with disabilities to create and maintain families.The CRPD protects the rights of people with disabilities to create and maintain families in several Articles, particularly Articles 23 and 25. Additionally, the CRPD reinforces the reproductive rights of women with disabilities.RecommendationThe United States should ratify the CRPD. NCD recommends that the Senate consider and expeditiously provide its advice and consent to ratification of the CRPD. U.S. ratification of the CRPD would reinforce American leadership in disability rights and support American efforts to promote the rights of parents with disabilities around the world. Previous PageNext Page