Who takes care of the caregiver?
For many families of people with intellectual and developmental disabilities (IDD), caregiving does not end when a child turns 18.
Parents, siblings, grandparents and other relatives may continue providing support for many years.
The federal government is now preparing an update to a national plan designed to improve support for family caregivers.
It is called the National Strategy to Support Family Caregivers.
What Is the National Strategy?
The National Strategy is a federal effort focused on improving support for family caregivers.
That includes people who provide unpaid care and support to loved ones who are older or have disabilities or other support needs.
The current strategy includes hundreds of actions for federal agencies, states, communities and other organizations.
The goal is to find better ways to recognize and support the people who spend their time helping family members live safely and successfully.
Why Is This News Now?
On September 22, 2026, the federal Administration for Community Living announced that it is seeking new members for the RAISE Family Caregiving Advisory Council.
The council includes people with different experiences, including:
- family caregivers;
- people with disabilities;
- people who need long-term services and supports;
- healthcare and social-service providers;
- long-term care providers;
- workers;
- state and local officials; and
- other caregiving experts and advocates.
The council will help support an updated National Strategy to Support Family Caregivers, which is expected later in 2026.
Why Should IDD Families Care About This?
Imagine a mother helping her adult son with IDD get dressed every morning.
A father may drive his daughter to appointments.
A sibling may help manage paperwork.
A grandparent may prepare meals, provide supervision or help with daily activities.
These family members are caregivers, even if they have never called themselves that.
Family caregiving can involve time, money, transportation, missed work, paperwork and planning.
It can also continue for decades.
That is why federal discussions about supporting family caregivers can matter to families in the IDD community.
Does This Mean Families Are Getting New Benefits?
Not yet.
This is important.
The National Strategy is a plan for improving caregiver support. The announcement does not mean that every caregiver will suddenly receive a new payment, benefit or service.
The updated strategy is expected to identify priorities, challenges and possible ways to improve support for caregivers.
Some ideas may involve federal agencies. Others may involve states, local communities, employers, healthcare organizations or service providers.
We will need to see the final updated strategy to know what specific actions are included.
What Kinds of Issues Does the Strategy Look At?
Family caregivers face many different challenges.
Support can involve issues such as:
Getting useful information.
Families need to know where to go when they need help.
Accessing services.
Finding and coordinating services can take time and can be confusing.
Financial security.
Some caregivers reduce their work hours or leave jobs because of caregiving responsibilities.
Caregiver health and well-being.
Supporting another person can be demanding, especially when a caregiver has little help.
Respite and additional support.
Caregivers sometimes need another trusted person to step in so they can rest, work, attend appointments or handle other responsibilities.
Why Family Caregivers Need a Voice
Policies can look very different on paper than they do in someone’s home.
A family caring for a person with IDD understands the everyday challenges that may not be obvious to someone outside the home.
That experience matters.
The federal RAISE Family Caregiving Advisory Council is designed to bring together caregivers, people receiving support, professionals and other experts to help guide this work.
What Should Families Do Right Now?
There is no new benefit that families need to apply for because of this announcement.
For now, this is something worth watching.
The updated National Strategy is expected later in 2026.
Once it is released, families can look at what is being proposed and whether any of the changes could eventually affect caregiver resources, programs or services in their communities.
NUDO Homes will continue watching federal and Texas developments that may affect individuals with IDD and the people who support them.
Because supporting individuals with IDD also means recognizing the families who stand beside them every day.
Last reviewed: September 2026
This article is provided for general educational purposes. The National Strategy to Support Family Caregivers is a federal strategy and should not be understood as creating an individual benefit or guaranteeing a particular service or payment.