The Department of Transportation announced that it would create the Advisory Committee on Accessible Air Transportation (ACCESS Advisory Committee). The ACCESS Advisory Committee is comprised of representatives from the disability community, airline industry and other stakeholders who will negotiate and develop a proposed rule concerning accommodations for air travelers with disabilities. The issues to be addressed are inflight entertainment, accessible lavatory on new single-aisle aircraft and service animals. The Committee will meet for the next six months to see if it can come to consensus on new rules addressing these issues.
The Coalition on Human Needs is sponsoring a webinar, Child Lead Poisoning: Preventable Harm, on Tuesday, May 3 at 1:00 p.m. Eastern Daylight Time. The lead poisoning of children and adults in Flint, Michigan has focused the nation’s attention on the increased risk for developmental delay and disability from contamination of the water supply. Lead in water affects many communities nationwide, and that lead from paint in older buildings is an even more prevalent source of child poisoning. This webinar will provide expert evidence about the consequences of lead poisoning in children, examples of work being done in Flint and Philadelphia to prevent it, and timely information about Congressional proposals to fund the solutions. Please register here.
The federal Interagency Autism Coordinating Committee (IACC) released its Research Portfolio Analysis Report for 2011-2012. The report tracks funding and trends for research-related projects by the IACC’s seven strategic objectives: screening and diagnosis, biology, risk factors, treatments and interventions, services, lifespan issues, and infrastructure and surveillance. The report found that combined federal and private investment in autism spectrum disorder research decreased from 2010 ($348.6 million) to 2011 ($299.9 million) and then increased in 2012 ($331.9 million). Proportionately, most autism research funding — 30 percent in 2012 — went toward studies focusing of the biology of the disorder, followed by research on risk factors and treatments and interventions. At the bottom end of the scale are spending on research looking at services (7%) and lifespan issues (1%) in 2012, both of which decreased from the prior year.
In January, 2016, President Obama announced a set of “New Executive Actions to Reduce Gun Violence and Make Our Communities Safer.” As part of this initiative, the Administration proposed to increase mental health treatment by $500 million and to take several steps to increase reporting to the National Instant Criminal Background Check System (NICS). The NICS is a federal database used to help identify people who are prohibited by law from shipping, transporting, possessing, or receiving a firearm. The law and regulations define who is subject to the mental health prohibition, including individuals who have been:
- Involuntarily committed to a mental institution for reasons such as mental illness or drug use;
- Found incompetent to stand trial or not guilty by reason of insanity; or
- Otherwise determined by a court, board, commission, or other lawful authority to be a danger to themselves or others or unable to manage their own affairs, as a result of mental illness or “marked subnormal intelligence”.
Last Friday, April 29, the White House announced that the Social Security Administration will soon publish a proposed rule to report information to the NICS about individuals who have been found eligible for Social Security or Supplemental Security Income (SSI) disability benefits based on a mental impairment “listing” and who have a representative payee. This would include many beneficiaries with intellectual disability and autism who have representative payees.
The Arc is concerned about the well-being of all Americans. As an organization that protects and promotes the human rights of people with intellectual and/or developmental disabilities (I/DD), The Arc is also concerned about the potential negative impact on people with disabilities and their families. The Arc’s concerns include the likelihood that the proposed rule, if implemented, could deter some people with mental impairments, including people with I/DD, from seeking access to Social Security and SSI disability benefits for fear of being added to the NICS or having their privacy violated. The Arc will be closely reviewing SSA’s proposed rule and submitting comments expressing our concerns.
On Monday, April 25, HHS released an advanced notice of a final rule revising Medicaid managed care regulations. The managed care rules were last updated in 2002. The intent of the re-write was to more closely align the Medicaid managed care rules with the rules governing other health insurance programs. The final rules included changes in the appeals process, the quality system, network adequacy, and a number of other changes. Many of the provisions of the rule will take effect 60 days after publication though some provisions are effective at a later date. The Arc will be reviewing the regulations and will provide additional analysis.
Last Wednesday and Thursday, April 27 and 28, the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities (the committee), held their bi-monthly meeting in Washington DC. The committee is mandated by section 609 of the Rehabilitation Act of 1973, as amended by section 461 of the Workforce Innovation and Opportunity Act (WIOA). The purpose of the committee is to prepare a report for the Secretary of Labor on: ways to increase employment opportunities for individuals with intellectual or developmental disabilities or other individuals with significant disabilities in competitive integrated employment; use of 14(c) certificates; and how to improve the oversight of such certificates. The committee’s final report is due to the Secretary of Labor in September, 2016. The Arc provided testimony at the most recent meeting, and provided The Arc’s position statement on employment for context.
The Administration for Community Living (ACL) has announced funds for new grants for Lifespan Respite systems. The grants will include a federal funding level of up to $200,000 per award for a 36 month project period and will fund up to three cooperative agreements. Grant funds are for planning, establishing, and expanding/enhancing Lifespan Respite Care systems in the states, including new and planned emergency respite services, training and recruiting respite workers and volunteers, and assisting caregivers with gaining access to needed services. While the eligible applicants are state governments, all applicants must demonstrate the support and active involvement of a range of government and non-government, private, non-profit and other organizations with a stake in serving populations eligible to receive services under the Lifespan Respite Care Act. Only one application per State will be funded. Once funded, grantees will be expected to collaborate with multiple state and local agencies representing all ages, populations and disability/disease groups in planning and carrying out the requirements of the project. The announcement can be found here.
The Older Americans Act Reauthorization Act of 2016 was signed into law by President Obama on April 19. Among its many provisions, Public Law 114-144 includes a fix to the National Family Caregiver Support Program (NFCSP) The NFCSP, which received $150 million in FY 2016, provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services. The new law extends eligibility to older relative caregivers (age 55 and over) of adults with disabilities (age 19 to 59).
On April 19, the Senate passed a bill to reauthorize the FAA. The bill includes provisions designed to improve the air travel experience for passengers with disabilities, including a review of airline policies regarding training for employees on assistance for people with disabilities and the creation of an Advisory Committee on the Air Travel Needs of Passengers with Disabilities. The House Transportation and Infrastructure Commitee has passed its version out of committee and it awaits action on the House floor.
On April 25, the FDA published a Proposed Rule in the Federal Register banning the use of electrical stimulation devices (ESD) to treat aggressive or self-injurious behavior. In considering the ban, the FDA determined that the risks of ESDs outweighed any potential benefits. The FDA “determined, on the basis of all available data and information, that state-of-the art treatments for SIB [self-injurious behavior] and AB [aggressive behavior] are positive-based behavioral approaches, sometimes alongside pharmacotherapy, as appropriate, and do not include ESDs. We focused on data in the scientific literature, current clinical practices, and information about the evolution of treatments for SIB and AB.”
These devices are believed to be currently in use by only one provider in the country, the Judge Rotenberg Educational Center (JRC) in Canton, MA. The FDA’s proposed rule provides an extensive review of the use of ESDs by JRC and the opposition to it by state agencies in Massachusetts and New York, as well as the United Nations and the U.S. Department of Justice. An Advisory Panel recommended the ban in 2014. The FDA is proposing that the ban apply to devices already in use, as well as devices sold or commercially distributed in the future, although it is willing to allow for some period of transition for some individuals. The agency notes that for “certain individuals currently subject to ESDs, immediate cessation could possibly result in a significant increase of SIB or AB before appropriate alternative therapies are in effect, and a more gradual reduction toward complete removal may be necessary for some patients, especially those who have been subject to ESDs for a considerable amount of time.” The FDA welcomes comment on how long those transitions may take.
Comments on the proposed regulation are due May 25, 2016. The Arc has been involved in advocating against the use of these devices for decades and applauds this proposed rule.