Research Pertaining to People with Intellectual and Developmental Disabilities

ACL has issued several funding opportunities for data collection and longitudinal research pertaining to people with intellectual and developmental disabilities. Please see the short descriptions below and links for more details.

State of the States in Developmental Disabilities-On-going Data Collection and Information Dissemination — The purpose of this project is to maintain national longitudinal research on state fiscal efforts related to services and supports for people with intellectual and developmental disabilities. Activities include: analyzing developmental disabilities and financial and programmatic trends in each state;  collaborating with other ACL or other federal agencies data collection projects; developing products for public knowledge and use; and conducting evaluation to demonstrate the impact of the project. View more details and application instructions . Deadline for submissions is by midnight on July 25.

Full story at

Nonprofit Meal Delivery Groups: Not Just About Food Anymore

THE CONCEPT IS SIMPLE: a healthy meal delivered to your door at little or no cost. It’s a lifesaver for about a million older adults in the U.S. who are unable to buy groceries and cook for themselves because they are homebound, sick or struggling financially.

But meal delivery service, typically provided by nonprofit groups, is evolving to include far more than dinner. “We’re not just here to deliver food. We’re here to help people live longer, healthier, more independent lives,” says Elaine Clark, CEO of Meals On Wheels Diablo Region in Walnut Creek, California.

Full story at US News Health

Reaching Out to Baby Boomers on National Hepatitis Testing Day

Hepatitis C is a blood-borne virus that can lead to a chronic infection and damage to the liver. Chronic hepatitis C infection is curable in most cases, but many people living with hepatitis C do not know they are infected and are not accessing treatment that can prevent disease progression and liver damage, including cirrhosis and liver cancer.

According to the CDC, approximately 75 percent of all people who are chronically infected with the hepatitis C virus in the United States are baby boomers who were born between 1945 and 1965. This age group also experiences one of the highest death rates from the virus. As these individuals grow older and live longer with undiagnosed hepatitis C virus infection, they are increasingly likely to develop severe liver disease and liver cancer.

May 19, National Hepatitis Testing Day, offers an opportunity to reach new groups, to raise awareness of hepatitis B and hepatitis C, and to encourage more individuals to learn their status. The CDC recommends that all adults born between 1945 and 1965 receive one-time testing for the hepatitis C virus. By testing and diagnosing all baby boomers with chronic hepatitis C virus, we can care for and cure many, averting at least 120,000 deaths, according to one CDC estimate.

Full story at

Help Create the Blueprint for Complex Care

States, community-based organizations, and health organizations are increasingly focusing on improving care for people with complex, medical, behavioral and social needs . However, there are many questions around direction, priorities, and shared language. What are the goals and priorities of the complex care field? How can we get everyone who is working on this problem on the same page and ensure that all are at the table?

To answer these questions, the Center for Health Care Strategies is partnering with the National Center for Complex Health and Social Needs and the Institute for Healthcare Improvement to launch an ambitious project: to develop a Blueprint for Complex Care . The goal of the Blueprint is to serve as a roadmap for the next phase of development in the field. To help build the Blueprint, they are using the Bridgespan Group’s Strong Field Framework for defining and creating “strong” fields of practice.

Full story at

An Advance Directive for Patients With Dementia

I had hoped that by now most adults in this country would have completed an advance directive for medical care and assigned someone they trusted to represent their wishes if and when they are unable to speak for themselves. Alas, at last count, barely more than one-third have done so, with the rest of Americans leaving it up to the medical profession and ill-prepared family members to decide when and how to provide life-prolonging treatments.

But even the many who, like me, have done due diligence — completed the appropriate forms, selected a health care agent and expressed their wishes to whoever may have to make medical decisions for them — may not realize that the documents typically do not cover a likely scenario for one of the leading causes of death in this country: dementia. Missing in standard documents, for example, are specific instructions about providing food and drink by hand as opposed to through a tube.

Advanced dementia, including Alzheimer’s disease, is the sixth leading cause of death overall in the United States. It is the fifth leading cause for people over 65, and the third for those over 85. Yet once the disease approaches its terminal stages, patients are unable to communicate their desires for or against life-prolonging therapies, some of which can actually make their last days more painful and hasten their demise.

Full story at the New York Times

Tips to Help You Age in Place

Joanne Theunissen was talking on the phone in the front yard of her remodeling company’s latest project. “I hope the hammering in the background isn’t too loud,” Theunissen said. “We have a full crew here: framers, electricians, and the plumber is just pulling in.”

Theunissen is the remodelers chair of the National Association of Home Builders and also the co-owner of Howling Hammer Builders in Mt. Pleasant, Michigan. She and her team have been busy transforming the two-story home of a couple who want to age in place. “They’re tired of the stairs, so we’re adding on a first-floor master bedroom, closet and bathroom,” Theunissen explains.

These kinds of jobs are big business for remodelers. Since last year, the NAHB has seen a 30 percent increase in the amount of its members seeking special training to help older clients who want to stay in their homes for as long as possible. Remodeling a house is just one way to make that happen.

Full story at US News

How Medicaid Work Requirements Could Hurt Older Americans

For some lower-income Americans, Medicaid is their lifeline to health care. That includes “older nonelderly” adults from 50 to 64 – an age range when chronic health conditions and mobility issues are common. Other people use Medicaid benefits so they can serve as family caregivers.

On Jan. 11, the Centers for Medicare & Medicaid Services announced that states can apply for waivers to implement work requirements for people who receive Medicaid benefits. Some older Americans will be affected.

To date, waivers have been approved in three states and are pending approval in others. Age limits vary for who might have to fulfill work or “community engagement” requirements for up to 80 hours a month. In Kentucky, Medicaid recipients are exempt at 64. In Indiana, 60 is the cutoff age. In Arkansas, however, 50 is the cutoff.

Full story at US News

Why don’t kids use their asthma medicines?

In a new analysis of interviews conducted with children who have asthma, their caregivers and their clinicians, Johns Hopkins researchers found that there was significant lack of agreement about why the kids miss their needed daily anti-inflammatory medication.

A report on the findings, published in the Journal of Asthma on Feb. 8, 2018, highlights the need for improved communication among patients, families and pediatric clinicians, according to Carolyn Arnold, a medical student at the Johns Hopkins University School of Medicine and the paper’s first author. “Consistent use of daily anti-asthma drugs — generally steroids delivered by inhaler — is lifesaving and the best way to prevent recurrent exacerbations and costly hospitalizations,” she adds.

According to some estimates, Arnold says, up to 60 percent of children with chronic asthma do not get or take their prescribed daily regimen of anti-inflammatory medication, which works to control and prevent asthma by reducing inflammation, swelling and mucus production in the airways. Not taking the prescribed medication regularly can lead to worsened asthma and more frequent asthma exacerbations.

Full story at Science Daily

Simple Home Improvements for the Vision Impaired

Coping with vision impairment has become a necessity for many more people as the baby boom generation ages, but some simple improvements can help aging homeowners stay independent and safe.

It can be something as basic as painting a door frame a different color or getting rid of dinner plates that blend right into a tablecloth. “They’re mostly subtle changes, but it can have a high impact,” said Charnora Simon, the coordinator of the adaptive living program at Helen Keller Services for the Blind, a nonprofit group.

She recalled one client, for example, who was having a tough time eating and drinking without spilling things. Ms. Simon spotted the problem right away: the client was using beige dishes and mugs on a white tablecloth.

Full story at the New York Times

New Funding Opportunity for Research on Community Living and Participation of People with Intellectual and Developmental Disabilities

A new funding opportunity from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has been announced for an Rehabilitation Research and Training Center (RRTC) on community living and participation for people with intellectual and developmental disabilities.

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders.

Full story at