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.

2 thoughts on “The Arc Celebrates Law Enacted to Support Family Caregivers

  1. I found your sight searching for child and adult care for children & adults with autism, ADD, etc. I am forwarding this information to my daughter who is moving from Utah to Arizona. She is a single parent who has just gone through a very difficult and abusive marriage & divorce. Her immediate family live in Arizona. She has 2 children aged 16 and 20. She is an amazing parent and a teachers assistant. She is trying to garner factual information to validate moving here to Arizona. The job market here is great. Her sister has one child with Autism and ADD as well, who does not work and is able to be that extra family to help get children to and from school. We are anxious to find out how ARC can transition children still in school and transition young adults into their community and how to find benefits they need, like respite care, etc. She is gathering up the paperwork for federal & state support and is receiving help to do that. My husband and I set up 2 special needs trust one for each of her children. We will e contacting local chapters of ARC to see what benefits are available for the children. If there are any ideas you may have to help her transition here with her children and support what is available for them in Arizona, we would love to hear them. Thank you.

  2. Great news about the Family Caregiving Act but you actually haven’t said what you accomplished or what changes are in order to help us aging caregivers facing our own retirement/mortality while pondering our adult childrens future.

    Here’s some suggestions….

    1. Major tax breaks for people caring for their disabled love ones in house 24/7.At the moment only medical issues are allowed to be taken off taxes. But what about the hundreds, even thousands of dollars we spend every month/year on things we normally wouldnt if we werent caring for a handicapped person? What about all the cash I spend doing things with, to, and for my son, that I have to also spend on myself? or pay for his aid?Toys? Games? Videos? recreation? gym memberships? pool memberships? gas and wear and tear on the car, damage to things around the house, stuff I have to replace,does anyone stop to think of how expensive it is to keep a mentally challenged person entertained and occupied 24/7? PLUS the fact that Im losing out on an income by giving up all hopes of a career and staying home full time. So, major tax breaks please.

    2.Streamline procedures and rules. For instance, in the Fee for Service program, money is available for paying for a day program OR paying for an assistant, aide or companion, which is great. And you can hire a relative, which is even better. BUT…if the relative Also happens to be a guardian…they are ineligible. Guardians cannot be paid caretakers, and I dont know why. If you know, love or trust someone enough to be your mentally challenged childs co guardian, why cant you have the option of hiring them as caretaker? After all, who better to deal with and understand…and forgive…. the often challenging behaviors that our loved ones make us deal with.Id much rather have the option to hire a guardian than a stranger from an agency. Oddly enough, the PPP program Does allow guardians to be caregivers, so there you have a weird disconnect. Why one program and not the other giving you that option?

    3. Aging Baby Boomers are starting to think about their options. If they have any money to leave their kids, why not make interest free mortgages available to to parents willing to help their millennial kids buy homes IF the millennias are willing to care for their handicapped sibling? In other words, make it easier for people to purchase their own home with their own money, but waive the mortgage interest so its more affordable. Given that anyone caring for a disabled person will have to give up part or all of their income for the rest of their lives its only fair to give them a break, and since the banks were helped out after the crash that was Entirely their fault in 2009 with BILLIONS of tax payer dollars I figure thats the least they could do. Best yet, its an incentive for siblings to bring their handicapped loved one into their home.

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