When a family has a child with special needs, the care of that child eventually falls on the shoulders of the entire family. The parents generally care for the child for as long as they are able. However, when the parents begin to age and are unable to care for their adult children with special needs, the siblings are often called upon to take over care of their special needs sibling. This brings extra responsibility and stress financially, emotionally, and can affect the schedule of the caregiving sibling. Siblings who are charged with the responsibility of a special needs adult must begin planning for how they are going to manage this situation before they must take over the responsibility.
1. Ease Your Way into Caregiving
The first tip for caring for an adult sibling with special needs is to ease your way into the role of caregiver. If the eventual care of a sibling with special needs is in the future, find tasks you can begin doing to care for them. Maybe begin by taking them for an appointment or for some other outing. Another great opportunity is to care for them during times when parents might be out of town or in order to just give parents a weekend break. This can be beneficial for all family members involved. It can give tired and aging parents a bit of rest while also giving the special needs sibling the opportunity to become more familiar with living in a different place. It gives the sibling caregiver a good chance to get to experience the needs of their sibling in a time frame that is more controlled.
2. Explore Legal Needs
Chances are the parents of the adult special needs child have put into place many resources to help care for their special needs child once they are unable to do so. But if a sibling is to be the future caregiver, they need to be involved in this planning and understand their role and legal rights and responsibilities. One legal issue that needs to be addressed is guardianship. The family needs to decide when the caregiving sibling should assume the role of guardian and take care of all legal paperwork necessary, so that this is in place when needed. An elder law attorney can be of assistance in helping to be sure all the proper paperwork is complete. If there is a special needs trust in place, the attorney can also help the family to make all the arrangements for the management of the trust. If a trust needs to be created, the attorney can also assist. Legal matters such as guardianship and the management of trusts can often take time, so it is important to have these conversations early and make decisions, in advance, as a family.
3. Have a Financial Plan
Often parents plan for the long-term care of adult children with special needs. However, there are families that have no plans in place. If a sibling knows that they will eventually be the primary caregiver for their sibling, they should begin becoming familiar with the benefits received by their siblings with special needs and benefits available to family members who serve as caregivers. It is very important that parents and future sibling caregivers sit down and discuss wills, trusts, and insurance, so that the caregiver also understands what financial support will be left for the care of the sibling with special needs. Outlining the cost of caring for the special needs sibling can also be a helpful step in planning to care for the sibling. Once a sibling caregiver understands the financial support and costs of taking care of the sibling with special needs, then they can begin planning ahead and creating a budget that works.
Planning ahead and knowing the legal and financial needs of caring for a sibling with special needs can help make a difficult transition run more smoothly. These changes are hard for all family members involved. Support is available, because even the most prepared will need help at one turn or another.
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