Endometriosis and Disability: Analysis of Federal Court Appeals of Social Security Disability Insurance and Supplemental Security Income Claims by Individuals Suffering From Endometriosis.

BACKGROUND: Endometriosis, a chronic noncancerous gynecologic condition commonly characterized by disruptive physical and psychosocial symptoms, can be disabling. Individuals in the United States with endometriosis who are unable to work before retirement age can apply for Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI). Given the multi-step process of disability review, it is important to better understand how disability decisions are made. This study aimed to examine approaches and rationales of U.S. federal appeals courts reviewing SSDI and/or SSI claims involving endometriosis-related issues of appeal. METHODS: We searched Westlaw and Nexis Uni records, available as of January 2021, for federal appeals of SSDI and SSI claims including endometriosis as an impairment. Two independent reviewers screened full-text cases and extracted data. Framework Analysis was applied to courts' rationales regarding endometriosis-related issues of appeal. RESULTS: Eighty-seven appeals addressed an endometriosis-related issue. Three themes-evidence, treatment, and time-were identified across the decisions. The courts' discussions across themes exposed rationales and evidentiary requirements that posed challenges for claimants with endometriosis. The courts found subjective reports of symptoms insufficient evidence of impairment and positive responses to treatments to indicate cures or prevent claimants from demonstrating the necessary continuous 12 months of impairment. Some courts expected claimants to use treatments such as contraception or hysterectomy without addressing the risks of such treatments or the fact that they might have been counter to claimants' needs and preferences. CONCLUSIONS: Individuals with endometriosis face evidentiary obstacles and common misconceptions about disease, diagnosis, and treatment in disability claims. SSDI and SSI endometriosis claims are systematically disadvantaged, particularly among those without access to care. The health care, policy, and legal systems can leverage the findings in this study to create a more equitable disability application and review system for those with chronic pain conditions such as endometriosis.

Federal Incentives to Reform Long-Term Care Under the Affordable Care Act: State Adoption of the Balancing Incentive Program, 2011-2014.

OBJECTIVES: The Balancing Incentive Program (BIP) was an optional program for states within the Patient Protection and Affordable Care Act to promote Medicaid-funded home and community-based services (HCBS) for older adults and persons with disabilities. Twenty-one states opted to participate in BIP, including several states steadfastly opposed to the health insurance provisions of the Affordable Care Act. This study focused on identifying what factors were associated with states' participation in this program. METHODS: Event history analysis was used to model state adoption of BIP from 2011 to 2014. A range of potential factors was considered representing states' economic, political, and programmatic conditions. RESULTS: The results indicate that states with a higher percentage of Democrats in the state legislature, fewer state employees per capita, and more nursing facility beds were more likely to adopt BIP. In addition, states with fewer home health agencies per capita, that devoted smaller proportions of Medicaid long-term care spending to HCBS, and that had more Money Follows the Person transitions were also more likely to pursue BIP. DISCUSSION: The findings highlight the role of partisanship, administrative capacity, and program history in state BIP adoption decisions. The inclusion of BIP in the Affordable Care Act may have deterred some states from participating in the program due to partisan opposition to the legislation. To encourage the adoption of optional HCBS programs, federal policymakers should consider the role of financial incentives, especially for states with limited bureaucratic capacity and that have made less progress rebalancing Medicaid long-term services and supports.

Responding to the Needs of People with Disabilities in the COVID-19 Pandemic: Community Perspectives from Centers for Independent Living.

Centers for Independent Living (CILs) are federally funded, community-based organizations designed and operated by people with disabilities that provide individual and systems advocacy, peer support, information and referral, independent living skills training, and transition services throughout the U.S. and its territories. Centers for Independent Living therefore offer a rich and detailed perspective on the needs of people with disabilities during the COVID-19 pandemic. In this brief report, we summarize COVID-19-related issues raised by 144 CIL administrators and staff in a national survey conducted in April and May 2020 and discuss their research and policy implications. Respondents voiced concerns about health and safety, long-term supportive services, social isolation, and economic insecurity. In the words of one center director, "The pandemic has pulled back the curtain on the depth of need in our local disability community."

Gravely Disabled: The Vestigial Prong of 5150 Designations.

Effective July 1, 1972, California's Lanterman-Petris-Short Act (LPS Act) set the precedent for modern mental health commitment procedures in the U.S. named after its authors, State Assemblyman Frank Lanterman and State Senators Nicholas C. Petris and Alan Short, the LPS Act sought to "end the inappropriate, indefinite, and involuntary commitment of persons with mental health disorder"; to "provide prompt evaluation and treatment of persons with mental health disorders or impaired by chronic alcoholism"; and to "guarantee and protect public safety." Despite citing to these articles of intent, the LPS Act violates its own legislative intent through its inclusion of "gravely disabled" in its enforcement of involuntary psychiatric hold designations (also known as "5150 designations"). First, police officers are not required to make a medical diagnosis of a mental health disorder at the time of a 5150 designation; the broad scope of "gravely disabled" increases the number of persons police officers can involuntarily transport, increasing the likelihood of inappropriate and involuntary commitment of persons with mental health disorders. Second, the broad scope of "gravely disabled" produces an onslaught of 5150-designated persons (whether improperly designated or not) being sent to LPS-designated hospitals with limited resources (e.g., lack of beds and psychiatric staff); this results in patients waiting for an inordinate amount of time for a psychiatric evaluation and/or a hospital bed. Third, it is unclear whether the LPS Act sought to provide protection for the mentally ill or to provide protection from the mentally ill in its guarantee of protecting "public safety"; the inclusion of "gravely disabled" in 5150 designations indicates that the LPS Act provided the public with a duplicitous means of removing the mentally ill, impoverished, and houseless from the streets under the guise of "public safety." This Paper suggests the following to help remedy the effects of implementing the broadly defined "gravely disabled" in 5150 designations: (1) Remove "gravely disabled" from the 5150 criteria; (2) integrate the community with mental health advocacy efforts by creating outreach and education programs; and (3) implement a client-centric approach to interacting with persons with mental health disorders through restorative policing and the establishment of a restorative court.

Exploring equity and inclusion in Malawi's National Disability Mainstreaming Strategy and Implementation Plan.

BACKGROUND: Equity and inclusion are important principles in policy development and implementation. The aim of this study is to explore the extent to which equity and inclusion were considered in the development of Malawi's National Disability Mainstreaming Strategy and Implementation Plan. METHODS: We applied an analytical methodology to review the Malawi's National Disability Mainstreaming Strategy and Implementation Plan using the EquIPP (Equity and Inclusion in Policy Processes) tool. The EquIPP tool assesses 17 Key Actions to explore the extent of equity and inclusion. RESULTS: The development of the Malawi National Disability Mainstreaming Strategy and Implementation Plan was informed by a desire to promote the rights, opportunities and wellbeing of persons with disability in Malawi. The majority (58%) of the Key Actions received a rating of three, indicating evidence of clear, but incomplete or only partial engagement of persons with disabilities in the policy process. Three (18%) of the Key Actions received a rating of four indicating that all reasonable steps to engage in the policy development process were observed. Four (23%) of the Key Actions received a score five indicating a reference to Key Action in the core documents in the policy development process. CONCLUSIONS: The development of disability policies and associated implementation strategies requires equitable and inclusive processes that consider input from all stakeholders especially those whose wellbeing depend on such policies. It is pivotal for government and organisations in the process of policy or strategy development and implementation, to involve stakeholders in a virtuous process of co-production - co-implementation - co-evaluation, which may strengthen both the sense of inclusion and the effectiveness of the policy life-cycle.

Living life with cerebral palsy? A description of the social safety nets for individuals with cerebral palsy in the Nordic countries.

AIMS: This report reviews major laws, acts and regulations of social benefits and services for individuals with disabilities, focusing on cerebral palsy in the five Nordic countries. It summarizes the available benefits and services and the re-application process and provides comparative analyses among the countries. METHODS: Published reports, articles and relevant government and municipal websites were reviewed for each respective country and used to compile an overview and comparison between the countries. RESULTS: In the Nordic countries, there are a number of laws and regulations in place to support individuals with cerebral palsy and their families. In addition, there are numerous social benefits available for which individuals with disabilities can apply. Although there are national differences, the similarities across the five countries regarding laws, social benefits offered for individuals with cerebral palsy and the application processes are clear. However, the application processes seem cumbersome and, at times, redundant. Physicians and other healthcare specialists repeatedly need to write 'medical certificates' describing the diagnosis and its consequences for a disability that is chronic and lifelong. CONCLUSIONS: Participation in society for individuals with cerebral palsy disabilities can be enabled by social benefits. By extension, social benefits may indirectly have implications for public health in individuals with disabilities. Although the lives of individuals with cerebral palsy - as with others - can improve in certain areas, the need for social benefits will generally increase, not decrease, over time. Although it is clearly important to have checks and balances that prevent system misuse, it might be worthwhile from a cost-benefit perspective to investigate whether the current systems could be improved to better manage time and resources and avoid emotional distress by streamlining the application process.

Measuring the impact of revised mental health legislation on human rights in Queensland, Australia.

The Convention on the Rights of Persons with Disabilities (2006) (CRPD) has been instrumental for initiating and shaping the reform of mental health legislation in many countries, including the eight Australian jurisdictions. Multiple approaches have been proposed to assess and monitor the compliance of States Parties' mental health legislation with the CRPD, and to evaluate its success in protecting and promoting the human rights of people with disabilities. This article reports an effort to index the impact of legislation on human rights by measuring changes in the prevalence of compulsory treatment orders applied to people with mental illness after the introduction of CRPD influenced mental health legislation in the Australian state of Queensland. We found that despite reforms intended to enhance patient autonomy, the prevalence of compulsory treatment orders increased after implementation of the new legislation. Possible reasons behind this unintended consequence of the legislative reform may include a lack of systematized voluntary alternatives to compulsory treatment, a paternalistic and restrictive culture in mental health services and risk aversion in clinicians and society. We recommend that the reforms in mental health policy as well as legislation need to go further in order to achieve the goals embodied in the human rights framework of the CRPD.

Disability Rights During COVID-19: Emergency Law and Guidelines in England.

Disabled people may be disproportionately impacted by the response to the COVID-19 outbreak because of the kinds of countermeasures needed to tackle it, and serious disruptions to the services on which they rely. There are reports from the disability community in England and elsewhere that measures taken to contain the spread of COVID-19 impact negatively on their human rights and experiences. This commentary focuses on the healthcare and social care systems in England and describes how laws and practices have changed under the COVID-19 pandemic, and how these changes affect the rights of disabled people.

Disability, Ethics, and Health Care in the COVID-19 Pandemic.

This article considers key ethical, legal, and medical dilemmas arising for people with disabilities in the COVID-19 pandemic. We highlight the limited application of existing frameworks of emergency planning with and for people with disabilities in the COVID-19 pandemic, explore key concerns and issues affecting the health care of people with disabilities (i.e., access to information and clinician-patient communication, nondiscrimination and reasonable accommodations, and rationing of medical goods), and indicate possible solutions. Finally, we suggest clinical and public health policy measures to ensure that people with disabilities are included in the planning of future pandemic-related efforts.The devastation evoked by the COVID-19 pandemic raises challenging dilemmas in bioethics. It also speaks to social justice issues that have plagued historically marginalized communities in the United States.Responses to the pandemic must be bound by legal standards, principles of distributive justice, and societal norms of protecting vulnerable populations-core commitments of public health-to ensure that inequities are not exacerbated, and should provide a pathway for improvements to ensure equitable access and treatment in the future.

Framing Sign Language as a Health Need in Canadian and International Policy.

Although in Canada, hearing screening and early intervention are presented as a health need, we question whether young deaf and hard of hearing children's access to language is adequately supported by public health and children's services. The Ontario Infant Hearing Program has the stated mandate of supporting the language development of deaf and hard of hearing infants and young children. However, this program presents parents with early intervention service options involving either spoken or signed language, but not both together. This policy effectively restricts access to sign language learning for a majority of Ontario's deaf children. Consequently, some deaf children suffer language deprivation and its deleterious effects on cognition and emotional development. In support of our arguments, we refer to Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which Canada has signed and ratified. The CRPD supports recognition of deaf children's right to sign language as a health need because language deprivation occurs in many children who are not offered sign language, and this is a permanent impairment imposed on top of hearing loss. We conclude that in Canada, health services for deaf children do not align with accessibility and human rights legislation, thus creating a policy gap that leaves deaf children vulnerable to additional impairment.

Adherence to the Convention on the Rights of People with Disabilities in Czech Psychiatric Hospitals: A Nationwide Evaluation Study.

This study sought to evaluate the quality of care in Czech psychiatric hospitals and adherence to the Convention on the Rights of Persons with Disabilities (CRPD). Each psychiatric hospital was evaluated by a team comprising a service user, a psychiatrist, a social worker, a human rights lawyer, and a researcher, all trained in using the World Health Organization's QualityRights Toolkit. We conducted content analysis on internal documents from psychiatric hospitals, observed everyday practices, and conducted 579 interviews across public psychiatric hospitals between 2017 and 2019. We found that none of the CRPD articles as assessed by the QualityRights Toolkit was fully adhered to in Czech psychiatric hospitals. We recommend both facility- and system-level interventions to improve CRPD adherence in the Czech context and in the wider region of Central and Eastern Europe. To achieve this, substantial investments are required.

The Implementation of the Convention on the Rights of Persons with Disabilities: More Than Just Another Reform of Psychiatry.

The social model of disability-which is grounded in the lived realities of disabled people, as well as their activism, research, and theoretical work-has enabled a historic turn in the understanding of disability. This model also facilitates the transition to the rights-based approach that is at the core of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). However, the social model of disability does not straightforwardly translate to the lives of people who end up being detained and forcibly treated in psychiatric facilities. This paper examines the implications of the lack of an equivalent theoretical framework to counteract the hegemony of the biomedical model of "mental illness" and to underpin and guide the implementation of the CRPD for people with psychiatric diagnoses. Critically engaging with some recent attempts to make the CRPD provisions integral to psychiatry, we expose fundamental contradictions inherent in such projects. Our discussion seeks to extend the task of implementation of the CRPD beyond reforming psychiatry, suggesting a much broader agenda for change. We argue for the indispensability of first-person knowledge in developing and owning this agenda and point to the dangers of merely remaking former treatment objects into objects of human rights.