Parents of people with intellectual and developmental disabilities (I/DD) are all too aware that their children may outlive them. This concern is now greater than ever because the life expectancy of people with I/DD is increasing, leading parents to wonder and worry about what the future will bring.
Helping parents plan for the future and find some peace of mind is an important role providers can play. “Families need to think through the approach working with providers, practitioners, other family members, and legal and financial advisors,” said William Mills, MD, senior vice president of medical affairs for BrightSpring Health Services.
To start, there are five steps families can take to ease their fears and increase their confidence that their loved one is supported according to their person-centered plan no matter what the future brings; and providers and practitioners can help.
Create a legacy for the loved one and a roadmap for I/DD providers and caregivers. Parents should consider putting together a document for staff that tells their loved one’s story and details their likes and dislikes, fears and phobias, favorite things and favorite foods, and any other information that will help staff provide the best possible care and quality of life for them. At the same time, a binder or box with photos, videos, and other things that will evoke happy memories and bring comfort can be useful. Mills noted, “Providers really owe a duty of care to the person being supported and parents are tuned into that person’s needs. It is so important to get parental insights on personal and specific information regarding the person’s goals and preferences so providers can ensure personalized care.”
Work with the team to develop a care plan. To the extent possible, it’s important for the family to collaborate with the care team to devise a care plan that includes family and insights of the person supported. “This will help ensure a continued focus on person-centered goals and preferences,” said Mills, no matter what the future brings.
Learn about the laws and regulations designed to protect people with disabilities. The Americans with Disabilities Act enacted civil rights for people with disabilities, including I/DD, and is the result of family members and people with disabilities advocating for extensive protections under federal law. The Social Security Act, including the Medicaid and Medicare statutes, provide laws around the services and supports that people with disabilities can receive to ensure they are not subjected to poverty or go without needed support. Most specific to I/DD is the Developmental Disabilities Assistance and Bill of Rights Act. This funds programs to support and empower people with developmental disabilities and their families. The bill authorizes programs such as State Councils on Developmental Disabilities to conduct outreach, provide training and technical assistants, and keep policymakers in the loop about disability issues.
Have open, honest conversations with family members. “It is important not to assume that your child’s siblings or other relatives will step into the parents’ shoes at some point,” said Mills. Even though they may care deeply about their loved one, they may have responsibilities and obligations that make it difficult or impossible to be a dedicated caregiver. These conversations may be emotional, suggested Mills, but they will help identify concerns, issues, and missing pieces that the provider can work with the family to fill. For instance, siblings may be willing to care for their brother or sister with I/DD, but they have a full-time job. In this case, they could work with the provider to identify community resources and opportunities for things like a viable day care program.
Put appropriate legal and financial safeguards in place. “Much can be done via efforts such as special needs trusts and estate planning,” said Mills. Sitting down with legal and financial experts can help ensure continued funding for the family member, protect their rights, and make sure that care and support are uninterrupted if parents or other caregivers predecease their loved one.
Mills and his colleagues want parents to be confident that their loved ones will be safe and happy when they can no longer care for them. He said, “In the US, there is a structure to step in and make sure people with disabilities continue to receive services even if their caregivers predecease them or their money runs out.” For instance, if someone is on a waiting list for something like a group home, admission may be expedited if family caregivers die. “There are safety nets,” Mills stressed.
The authors would like to thank Esmé Grewal, J.D., vice president of government relations at BrightSpring Health Services, who provided preparatory guidance and additional context relevant to this article.
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