November 20, 2024
Supporting Siblings of Individuals with Intellectual and Developmental Disabilities
Many parents of children with intellectual disabilities assume that the family, especially siblings, will continue to provide care after they’re gone. Yet so many siblings feel unprepared for this role. They're not ready for the great deal of adjustment that involves so much more than they may have considered based on their less involved observation, even as a close family member. The responsibilities involved usually include a great deal more than basic caregiving—there are emotional and behavioral challenges, public benefits to navigate, and financial oversight to manage. The truth is, not every sibling is equipped for these responsibilities, and they shouldn’t have to be—at least not on their own. Recognizing and utilizing available resources can ease the burden, providing support for both the sibling and the individual with disabilities.
There’s another elephant in the room: caring for someone with intellectual disabilities can be uniquely challenging. Even once a family has conquered the maze of public benefits, emotional and behavioral issues can arise. The sibling may simply not be up to the task due to their own obligations or the specific behaviors of the individual, which can be particularly difficult if old “hot buttons” are pushed. Many siblings carry an enormous sense of guilt, feeling that they “must” be the sole provider of care. But it’s important to remember there are other resources to rely on, and the sibling’s role can be reduced or supplemented by available resources so that their involvement isn’t overwhelming. Here are some resources and strategies to consider.
Start Now—Create a Circle of Support
When siblings are the primary caregivers, burnout usually becomes a real concern. Building a circle of support around the individual with Intellectual and Developmental Disabilities (IDD), including family members, friends, professionals, and community resources, helps distribute caregiving responsibilities. No one should be subjected to the surprise of this responsibility and prepared and without ample resources to prevent overwhelming circumstances, as well as to keep the level of care uninterrupted that is given to the individual who receives the care. This network can prevent the sibling from feeling isolated at a critical time of transition. They can be kept from becoming overwhelmed and provided with additional backup when it is most needed.
Understanding Family Dynamics and Avoiding Conflict
Establishing a circle of support early can reduce tension by clarifying roles. Family members may have different views on care priorities, financial contributions, or the level of responsibility each person should assume. Open discussions and regular check-ins help ensure that each person’s role is understood and prevent misunderstandings early, ideally before they arise.
Practical Steps:
- Identify Supportive Individuals and Resources: You’ll need all the assistance you can get. Leave no stone unturned. Involve family members, friends, local support groups, and professional caregivers who are willing to help. Everyone can contribute in different ways—whether it’s with companionship, transportation, or hands-on caregiving.
- Hold Regular Check-ins: Schedule periodic check-ins with your support network to keep everyone informed, address emerging issues, and make adjustments as needed. This ensures that care remains consistent and adaptable.
Plan Now for the Future
When you are the care provider for an individual with IDD, the best time to start planning for the future is months or even years ahead. The second best time is right now. Don't wait any longer. Getting started with a concrete plan is critically important to do before you see the change in circumstances coming. According to The Arc’s 2017 FINDS survey, over half of caregivers have no concrete plan for continuing care. Don’t wait any longer to recognize how critically important it is to have contingencies in place.
Planning starts with financial and legal arrangements but also there are all the healthcare needs and personal preferences to prepare for too. Creating a comprehensive future plan will make sure the individual with IDD receives appropriate, and consistent care once the primary caregiver is no longer available.
Easing Family Concerns with Clear Plans
Future planning reassures family members that there is a well-defined course of action, which reduces potential conflicts and anxiety about who will step in if the primary caregiver can’t continue. With a documented plan, families can avoid last-minute decisions and tension over shared responsibilities or resources.
The Arc’s Center for Future Planning offers tools like the "Build Your Plan" tool, which allows families to document important preferences and needs. Additionally, the Center provides videos and training programs, which can be helpful for siblings who may feel overwhelmed by the complexities of future planning.
Regional Center Services: Helping Families with Essential Support
For families in California, Regional Centers are a valuable resource that provides support specifically for individuals with intellectual and developmental disabilities (IDD). Funded and managed by the California Department of Developmental Services, these centers offer a range of services designed to help with everything from daily living skills to healthcare needs. Regional Centers work with families to assess eligibility, plan care, and connect individuals with programs in their communities. For siblings stepping into caregiving roles, a Regional Center can be a huge relief, taking on many of the responsibilities that might otherwise feel overwhelming.
What Regional Centers Do
Regional Centers help families create a customized plan for their loved one, focusing on their unique needs. They provide assessments to determine eligibility, then work with families to coordinate services, such as job training, social activities, healthcare access, and even housing support. By handling much of the organizing and monitoring, Regional Centers lighten the load for siblings, allowing them to focus more on their relationship with their sibling rather than managing all the details alone.
How to Get Started
- Meet with a Service Coordinator: The first step is to meet with a coordinator at your local Regional Center. This person will help explain what services are available and guide you through the process of building a support plan that fits your sibling’s needs and goals.
- Advocate for a Comprehensive, Flexible Plan: Work with the coordinator to develop a care plan that’s centered on your sibling’s specific needs and adjusts over time. Regular check-ins with the center will keep the plan effective and relieve you from having to handle every change on your own.
For more information about Regional Centers and to find one near you, visit the California Department of Developmental Services website: https://www.dds.ca.gov/rc/.
Certified Care Managers
If there are adequate funds, families can engage a certified care manager. The investment in a certified care manager can be substantial, but it is well worth it when it's possible. A certified care manager can monitor and advocate for the individual, overseeing healthcare, managing support staff, and they can even handle benefits coordination. They have a person-centered, one-to-one care approach with a focus on the individual with intellectual disabilities. For siblings who are stretched thin, this type of support can be invaluable, allowing them to step back, at least partially, from full-time daily responsibilities while still knowing the one in their care is in good hands.
Private Fiduciaries for Financial Oversight
When a sibling is responsible for managing an inheritance or financial resources, tensions can arise. Financial management often introduces a level of control that can create friction between the sibling and the beneficiary. In such cases, families may consider engaging a private professional fiduciary to manage financial decisions. This approach can reduce stress and prevent conflicts, allowing the sibling to focus on family support rather than financial oversight.
Understanding Family Tensions over Financial Management
Family tensions often emerge around finances, especially if family members hold differing opinions about how resources should be allocated or have concerns about who controls the funds. Hiring a fiduciary provides neutral oversight, helping reduce conflict and ensuring that financial decisions are transparent and professionally managed.
Implementation Tips
- Choose a Skilled Fiduciary: Look for fiduciaries who have experience managing finances for individuals with disabilities. Organizations like the Professional Fiduciary Association of California or the National Guardianship Association can provide reliable recommendations.
- Set Up Regular Family Meetings: Having the fiduciary provide regular updates to the family can help maintain transparency, reduce misunderstandings, and allow for any necessary adjustments.
Next Steps
- Utilize Planning Tools: Take advantage of resources like those offered by The Arc’s Center for Future Planning to document care preferences and arrangements.
- Review and Update Plans Regularly: As family circumstances and needs change, revisit and adjust the plan to keep it relevant. Regular updates ensure that it remains an effective guide for future care.
In Conclusion
Caring for a sibling with intellectual disabilities can be both challenging and rewarding. By utilizing Regional Center services, certified care managers, private fiduciaries, and a network of support, siblings can create a sustainable caregiving strategy. Planning for the future brings added security and peace of mind, allowing siblings to focus on their relationship while ensuring their loved one’s care needs are met. With the right resources and support, siblings can navigate the caregiving journey with confidence, knowing that they’re not alone.