By: Waverly Ann Harris

Friends Life Community (FLC) serves teenagers and adults with intellectual and developmental disabilities (IDD), or as we call them, Friends. Our focus is to help the Friends grow personally, develop socially, and be active members of the community. Though all of our planning is person-centered, it is critical that the family members are involved in planning, problem-solving, and follow-through to ensure the Friends have the support they need. Parents often take the lead in providing the primary support for the Friend and are their main caregivers. That is until, for whatever reason, they are no longer able to care for the Friend, then siblings often step into that role.

Several of the Friends at FLC have siblings that are quite active in their day to day lives. About 15% of the Friends have siblings as their primary caregiver. All siblings in this situation have stated that they wish they had been more involved in the decision-making process while their parents were the main caregivers so that they would have been better prepared for the role. For this reason, and because siblings bring a necessary perspective to the circle of support, we encourage siblings to be involved in future planning for the Friends, as well as FLC.

From our experience, siblings bring a uniquely important perspective that is necessary for future planning.

1. Siblings are often fully invested, yet one step removed from being a parent.

2. Independence is in the best interest of all siblings.

3. Siblings can find it easier to take risks.

Siblings are often fully invested, yet one step removed from being a parent.

Siblings have a special love for each other. Siblings of individuals with disabilities love their brothers and sisters in a different way than parents. They often do not see themselves as caregivers, rather just a typical sibling. Often they do not have the lens that something is “wrong” with their brother or sister, therefore, they don’t treat them in that way. They recognize that they have specific needs and will work to ensure they get what they need, however, they are less likely to make unnecessary accommodations.

This perspective carries over into adulthood. When we meet with families to discuss the goals of the Friends, siblings are often the ones who have an easier time seeing the possibilities. They play an important role in problem-solving and seeing the situation with a unique and fresh perspective. They are also the only ones who know all parties at home. Therefore, they can also help mediate between the Friend and their parents so that the solutions will work for all parties. And ultimately, the parents feel a huge sense of support and weight lifted, seeing the sibling take initiative and wanting to be a part of the planning. Likewise, the sibling feels empowered with fewer unknowns and are able to establish confidence in the process. And the Friend’s circle of support grows and becomes stronger and more stable. Everyone wins.

Independence is in the best interest of all siblings.

It is difficult for all parents to make the transition from parent-caregiver to parent-friend, no matter the age or the abilities of an adult child. Parents and children have a life-long history of establishing patterns and routines; some of those routines enable the Friend to be more dependent upon others, just out of habit. Siblings, particularly those who have not lived in the same home for several years, have fewer established patterns when it comes to daily living skills. Knowing that they will one day take on more responsibility and decision-making for their sibling, they are motivated to ensure the Friend is as independent as possible.

It is common for all of us to be more dependent upon our parents. Mothers and fathers play a specific and important role in our lives and no matter how old we get, there will always be things we want our parents to do for us. However, in planning for the future and independent living, it is important to include perspectives of people who know the Friend and can advocate for ideal independence as if parents aren’t there, hence the importance of sibling input.

No one will love the Friend the same way a parent loves them. Therefore, it is not reasonable to expect they will have the same type of care and relationship once the parent is no longer the primary caregiver. Siblings have a different relationship and seem to advocate for the best care possible with the least amount of direct service. Often that is what the Friend also wants. Siblings can help push the parents into creating a structure that helps them enjoy less dependency as well.

Much of this is because:

Siblings find it easier to take risks.

They have not had to live with the same fears as the parents. They often have an easier time trying new things while providing the safety net of support if it does not work out. Parents have a more difficult time taking risks because it is most likely harder on them if it does not work out. This is true and siblings need to be understanding of this – however, siblings can help establish new patterns and provide parents with the support needed for everyone to take risks.

It is impossible for the Friends to gain independence without taking risks; that is true for everyone. It is impossible to have the courage to take risks without a safety net of support. This is true both for the Friends and for the parents. FLC tries to provide part of this support, yet siblings have even greater power. When they are included in future planning they have buy-in for taking responsibility to be a part of this safety net. It will also give them an opportunity to practice making decisions and supporting their sibling with their own safety net of parent support.

Individuals with intellectual and developmental disabilities deserve a support system, and so do their families. Siblings have numerous assets to bring to the table when it comes to supporting their brother or sister. They have insight that is important for current decision-making as well as future planning, and they deserve to have a key role in future planning as these decisions are likely to have a big impact on their future as well.