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The Arc Celebrates Law Enacted to Support Family Caregivers

Washington, DC – The Arc released the following statement in response to the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act being signed into law by President Trump.

“Most people with intellectual and developmental disabilities (I/DD) in our nation live with family caregivers, and nearly 900,000 of these family caregivers are over the age of 60.  For many individuals with I/DD, their caregivers mean a life in the community with their family and friends. Without support for these caregivers, individuals with I/DD could face seclusion in institutional settings.

“These caregivers are providing invaluable assistance with meals, transportation, personal hygiene, money management, and any other support needed. Even families that are fortunate enough to have formal long term supports and services in place for their loved ones – overwhelmingly funded through Medicaid – often maintain lifelong caregiving responsibilities. The demands of caregiving can be enormous, particularly for aging caregivers, which is why this law is so meaningful to The Arc’s community.

“We thank the law’s champions, Senator Collins, Senator Baldwin, Representative Harper, and Representative Castor, for ensuring the development of a national strategy to support our family caregivers. Each vote for this bill was a vote to support caregivers so that they can continue in their critical roles in supporting their loved ones. The bipartisan support of this bill is a heartening reminder that Members of Congress can successfully work across the aisle to support the needs of their constituents with disabilities. Disability rights are human rights and the overwhelming support of this new law should be celebrated by individuals with disabilities and their families nationwide,” said Peter Berns, CEO of The Arc

This legislation directs the Department of Health and Human Services to develop, maintain, and periodically update a National Family Caregiving Strategy, a recommendation of the national Commission on Long-Term Care. The Department is also charged with convening a Family Caregiving Advisory Council for the joint development of the strategy. Elements of the strategy are to include recommended actions that Federal State, and local governments and other entities may take to promote person and family-centered care, family involvement in assessment and service planning, information sharing and care coordination with service providers, respite options, financial security and workplace issues, and efficient service delivery.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Responds to New Report Exposing Abuse and Neglect of Individuals With Disabilities in Group Homes

Washington, DC – At the request of Congress, the U.S. Department of Health and Human Services Office of Inspector General investigated states’ monitoring and reporting of injuries and other critical incidents of people with disabilities living in group homes. Following the investigation, a report was issued that cited numerous incidents of abuse of people with intellectual and developmental disabilities in group homes. The report found that up to 99% of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. Below is The Arc’s response to the report:

“We are grateful to the Department of Health and Human Services, Office of Inspector General for its report that draws attention to critical incident reporting in group homes and provides states the tools to address the health and safety of individuals with intellectual and developmental disabilities (I/DD) in their communities. Abuse, neglect, and injuries to people with disabilities must be taken seriously, reported to the appropriate law enforcement or state agencies, and prosecuted as appropriate for crimes committed. System failures must be addressed to ensure improvements.

“The OIG report is certainly cause for alarm and signals the need for rededication and reinvestment to ensure that everyone has the freedom to live safe from harm in their communities. It is important to highlight and appropriately address such jarring results, however, we are concerned that some see this as a call for returning to the time when people with I/DD were placed in institutions and hidden away from the community. This report only focuses on group homes, not on the whole service system including institutions, the narrowness of the report must be taken into consideration and the report must not be used to eliminate options for community living.

“Throughout The Arc’s history we have fought for community inclusion for individuals with disabilities. Everyone deserves the right to choose where and with whom they live and it has been proven that people with disabilities thrive when living, working, and enjoying life in the community with their peers. We remain steadfast in our commitment to ensure that the services people with disabilities rely on for inclusion remain intact because community supports are critical. When people live in their communities they are visible and their neighbors and friends look out for them and know when something is wrong. We must make no mistake, it is life in the community that really is safest,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Home is in the Community

Most people with I/DD share the dream of living in the community in a home of their own.  For some, that dream may become a reality.

Earlier this week, Health and Human Services (HHS) Secretary Kathleen Sebelius announced that the federal government will dedicate billions of dollars to help individuals with disabilities access care in the community as opposed to institutions.

“There is more evidence than ever that people who need long-term care prefer to live in their own homes and communities whenever possible,” said Donald Berwick, administrator of the Centers for Medicare and Medicaid Services. “To restrict these individuals to institutions where even the simplest decisions of the day such as when to get up, what to eat and when to sleep are made by someone else must no longer be the norm.”

HHS is also proposing new rules to allow states to access additional federal Medicaid matching funds if they encourage individuals to live in a community setting, as opposed to a nursing home or other institutional setting.

Thirteen states are slated to receive about $45 million for demonstration grants this year, with $621 million budgeted through 2016.   Federal officials are awarding $621 million over the next five years to expand the Money Follows the Person to help people with disabilities who are living in institutions transition into the community with services and supports programs.

The new grants will have an impact on 13,000 people in Colorado, Florida, Idaho, Maine, Massachusetts, Minnesota, Mississippi, Nevada, New Mexico, Rhode Island, Tennessee, Vermont and West Virginia.

The Arc believes that adults with I/DD should have the opportunity to lead lives of their own choosing, reside in the community and to live independently with ready access to whatever services and supports they need to be included and participate as full members of the community.