Preparing to Become Caregivers for a Brother or Sister with Intellectual Disabilities

As a sibling of someone with I/DD, each of our lives and experiences will be different and unique. What is shared by many of us, is a responsibility to support our siblings to help them lead robust lives of their choosing. We know that taking on this responsibility can feel daunting and filled with unknowns. 

Some siblings may already know the information below, for others, some, or all, of this may be new. No matter where you fall on that spectrum, we hope this short guide can be useful as you think about the future and help spark conversations with your sibling and other family members.  

Start the Conversation: Open and ongoing communication with your family, including your sibling, is crucial. Planning for the future won’t be solved in a single conversation, and the sooner you start talking with them the better. These conversations can help set expectations, foster collaboration, and ensure everyone’s voice is heard. While these conversations can be difficult, starting them early lets your sibling know you care about them, and can reduce anxiety about the future for you, your sibling and parents. 

This overview aims to provide a foundation to help you prepare and feel more confident in stepping into this role.

Five Things You Can Expect and Prepare For

1. Involvement in Routine Responsibilities: Be ready to be involved in the management of daily tasks like helping with meals, transportation, and ensuring a safe and structured environment. Ensuring a consistent schedule can make this easier for both you and your sibling.
   • Getting Started: Talk with, and maybe find a time to shadow, current caregivers to learn routines and understand key tasks that need to be maintained.
2. Communication with Support Systems: You will need to collaborate with case workers, healthcare providers, therapists, social workers, and others. Understand who your siblings team is, their roles and maintain clear lines of communication.
   • Getting Started: If you haven’t, meet and get to know the key members of your siblings support system to introduce yourself and establish a line of communication. If your parent has been the primary caregiver, ask them for a list of who these people are and to help make introductions.
3. Financial and Legal Considerations: Handling finances, managing benefits, and taking on legal roles like guardianship or power of attorney are likely to become part of your responsibilities. It is important to understand what plans are in place, and how recently those plans have been reviewed and updated.
   • Getting Started: Talk to your family about what financial and legal plans are already in place. If plans are not in place, consult with a financial planner or attorney specializing in special needs to understand your options.
4. Advocacy: You will often need to advocate for your sibling’s needs, whether in educational settings, healthcare, or employment. Understanding their rights and resources will be key.
   • Getting Started: Research local and federal disability rights laws and join advocacy groups to gain insights and support.
     
5. Social and Emotional Support: Your sibling may depend on you to help foster social connections and maintain relationships. Encouraging friendships and community involvement will enrich their life.
   • Getting Started: Explore local community centers or groups that offer social opportunities for individuals with intellectual disabilities.

Five Things That May Be Harder to Anticipate

1. Changes Over Time: Your sibling’s needs will evolve, requiring new approaches and adaptations. For example, the benefits they receive, and are eligible for, may change as they get older. Building a solid foundation in the near-term will help to adapt as things change. Review plans regularly with your sibling and family, especially after significant life events.
2. Emotional Challenges: The emotional bond with your sibling may deepen, but moments of frustration, guilt, or sadness can arise unexpectedly. These feelings are normal and manageable with support.
   • Getting Started: Join caregiver support groups or consider seeing a therapist to process emotions and gain perspective.
3. Emergency Situations: Crises, like sudden health issues, can arise. Being familiar with emergency plans and having a trusted network is invaluable.
   • Getting Started: Create a comprehensive emergency plan, including medical records, key contacts, and a clear action strategy.
4. Impact on Relationships: Balancing caregiving with personal relationships, like with a partner, children, or friends, may require thoughtful communication and planning.
   • Getting Started: Set aside time to communicate openly with loved ones about your caregiving role and how they can support you.
5. Personal Identity and Growth: Taking on this role can shift how you see yourself and your future. Navigating these changes will take time and self-reflection.
   • Getting Started: Reflect on your values and goals, and seek mentorship or guidance from others who have been in similar roles.

Key Elements to Focus On as a Caregiver

1. Understanding Your Sibling: Invest time in learning about your sibling’s unique needs, preferences, and abilities. Building a deep connection helps you provide personalized care.
2. Establishing a Support Network: Surround yourself with professionals, family, and peer caregivers who can provide guidance and share the load.
3. Planning for the Future: Work with your family to create a long-term care plan that addresses housing, finances, and healthcare. Early planning can ease transitions.
4. Fostering Independence: Encourage your sibling to do as much as they can independently. This builds their confidence and reduces their reliance on you.
5. Accept Risk: The most carefully developed plans may be overcome by events. Be flexible and accept that you cannot prepare for every possible development.
6. Celebrating Wins: Recognize and celebrate progress and achievements—big or small. Joy and gratitude are essential parts of caregiving.

Final Thoughts

Stepping into a caregiving role for your sibling is an act of love and dedication. While it may seem daunting, you are not alone. By preparing for what you can and staying adaptable to what you can’t foresee, you’ll create a fulfilling life for your sibling and yourself. Remember to seek support, ask questions, and prioritize the well-being of both you and your sibling. You’ve got this.

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Co-authored by Steve Barney, Vice Chair, LIFE Board of Directors, and Walter Suskind, who is the older brother of LIFE resident Owen Suskind, and a member of the LIFE Aging Committee.