In the spirit of this year’s Older Americans Month theme, “Blaze a Trail,” The Arc recognizes the many parents of adults with intellectual and developmental disabilities (I/DD) who fought for decades to raise their children at home, to realize their rights to free and appropriate public education, and for recognition as valued contributors to the community. The Arc is committed to supporting these aging caregivers and their adult sons and daughters with I/DD to develop a roadmap for the future.

Future planning is important for all families, but it can be especially challenging for the almost 1 million families in which adults with I/DD are living with aging caregivers. In two-thirds of these families, there is no plan in place for the future. Many of these families have no connection to the disability community or the disability service system. It is our role to support them to overcome the fear of planning and provide them the information and resources they need to create future plans.

To support these trailblazing families, The Arc of the United States launched the Center for Future Planning™ in 2014. Discussing these major life transitions and putting a plan in place may actually alleviate some of the stress experienced by aging caregivers, their adult sons and daughters, and other family members and supporters.

The Center’s website provides reliable information and assistance to individuals with I/DD, their family members and friends, staff at chapters of The Arc, and other disability professionals on:

• person-centered planning
• supported decision-making and guardianship
• housing options
• financial planning (including public benefits, special needs trusts, and ABLE accounts)
• employment and daily activities
• making social connections
• providing information if an urgent need arises

During Older Americans Month, here are some ways you can access more help:

• Read more information about future planning and see how other families have planned.
• View The Arc’s webinar on supports and services for aging caregivers.
• Visit The Arc’s new Build Your Plan™ online tool that enables families to create accounts and begin to build their plans within the Center for Future Planning™.
• Encourage families you know to start the process and to get support in their communities. Chapters of The Arc around the country can provide guidance and information about local resources. Families can also identify professionals in their communities to help them create and implement future plans through The Arc’s Professional Services Directory.
• In addition, Area Agencies on Aging (AAA) can help with accessing services and support available to seniors. AAAs offer a variety of home and community-based services such as respite, meals on wheels, and transportation. Visit ncoa.org for more information about additional benefits available to seniors.

Supporting aging caregivers and adults with I/DD is an ongoing process and is possible with the help of other family members, friends, the community and professionals. It’s important to work together to develop a plan that will ease the stress of future transitions. You can contact The Arc’s national office at (202) 202-617-3268 or futureplanning@thearc.org for more help.

By: Nicole Jorwic, Director of Rights Policy

Every behavior is a form of communication. This is a truth that must be remembered, as we advocate for the civil rights for individuals with intellectual and developmental disabilities (I/DD). Even self-injurious or aggressive behaviors are an attempt by an individual to demonstrate something. Supports should be in place to draw out that communication, not shock it or punish it away. This is why the recent proposed rule from the Food and Drug Administration (FDA) banning the use of electrical stimulation devices (ESD) to treat these forms of behavior is so important.

Per the FDA’s proposed rule, the use of electrical stimulation devices pose the risks of depression, fear, anxiety, panic, learned helplessness, and are associated with the additional risks of nightmares, flashbacks, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and withdrawal from usual activity. The science verifying those risks is clear, while there is no scientific proof that the use of electric shock has benefits in the short or long term.

The science has been clear for years and for decades The Arc has provided testimony at hearings on this issue, submitted comments, and filed amicus briefs encouraging the ban of these devices. Instead of using harmful and demoralizing ESDs, the focus of treatment for all individuals with I/DD who cannot use their voices or other forms of communication to express their wants and needs, must be on changing environmental factors. This will allow the roots of challenging behaviors to be found and allow the individual to discover alternative behaviors that can be used to meet their needs.

The Arc has adopted position statements opposing the use of aversive procedures since at least 1984. Our current position statement on Behavioral Supports developed jointly with the American Association on Intellectual and Developmental Disabilities (AAIDD) and adopted by both organizations in 2010, states in part:

Research indicates that aversive procedures such as deprivation, physical restraint and seclusion do not reduce challenging behaviors, and in fact can inhibit the development of appropriate skills and behaviors. These practices are dangerous, dehumanizing, result in a loss of dignity, and are unacceptable in a civilized society.

The Arc and AAIDD are opposed to all aversive procedures, such as electric shock, deprivation, seclusion, and isolation. Interventions must not withhold essential food and drink, cause physical and/or psychological pain, or result in humiliation or discomfort.

Our position statement on Education, which was adopted by the Congress of Delegates in 2011, states in part: “In order to provide a free, appropriate public education for students with I/DD, all those involved in the education of students with I/DD must ensure that students with disabilities are not subjected to unwarranted restraint or isolation or to aversives.”

The Arc is strong in its belief that it is the responsibility of government to protect individuals with disabilities from mistreatment. Using aversive procedures to change behaviors of individuals with intellectual and developmental disabilities is dangerous, dehumanizing, a violation of civil rights, results in a loss of dignity, and is unacceptable in a civilized society.

The Arc applauds the FDA in its effort to ban the use of devices that emit electric shock as a means of modifying the behavior of individuals with intellectual and developmental disabilities.

By: Nicole Jorwic, Director of Rights Policy

The Department of Labor released the much anticipated final Overtime rule today, with the an effective date of December 1, 2016. Along with the rule, DOL announced a non-enforcement policy for providers of Medicaid-funded services for individuals with intellectual or developmental disabilities in residential homes and facilities with 15 or fewer beds. The full policy will be published in the Federal Register next week. The non-enforcement policy will be in effect from December 1, 2016 (when the final rule goes into effect,) until March, 2019. In a call between The Arc staff and DOL and it’s Wage and Hour division, it was highlighted, that this non-enforcement timeframe aligns with the implementation timeline of the Home and Community Services final rule. This will allow HCBS Medicaid providers, who qualify, to prepare for the implementation.

From the DOL Website: Key Provisions of the Final Rule

The Final Rule focuses primarily on updating the salary and compensation levels needed for Executive, Administrative and Professional workers to be exempt. Specifically, the Final Rule:

1. Sets the standard salary level at the 40th percentile of earnings of full-time salaried workers in the lowest-wage Census Region, currently the South ($913 per week; $47,476 annually for a full-year worker);
2. Sets the total annual compensation requirement for highly compensated employees (HCE) subject to a minimal duties test to the annual equivalent of the 90th percentile of full-time salaried workers nationally ($134,004); and
3. Establishes a mechanism for automatically updating the salary and compensation levels every three years to maintain the levels at the above percentiles and to ensure that they continue to provide useful and effective tests for exemption.

Additionally, the Final Rule amends the salary basis test to allow employers to use nondiscretionary bonuses and incentive payments (including commissions) to satisfy up to 10 percent of the new standard salary level.

DOL has released several documents for non-profits including guidance and a shorter fact sheet. Additional resources can be found on DOL’s website. DOL will also be hosting several webinars to provide additional information: register here.