Overview

Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Starting the Conversation: Future Planning and Siblings of People with IDD

Author(s)

Katie Arnold is Executive Director, Sibling Leadership Network, Chicago, Illinois as well as the Director of Community Education at the Institute on Disability and Human Development at the University of Illinois at Chicago. She may be reached at katie.arnold@siblingleadership.org.

Tamar Heller is Distinguished Professor and Head of the Department of Disability and Human Development at the University of Illinois at Chicago. She also directs the Family Support Research and Training Center and the University Center of Excellence in Developmental Disabilities for the State of Illinois. She may be reached at theller@uic.edu.

Two young adult brothers, both wearing glasses, look over a notebook with a calculator nearby.

Future planning is a process for families of people with intellectual and developmental disabilities (IDD) to plan for the future, especially as parents age. It involves all areas of a person’s life: social, school, work, housing, financial, legal, and other needs and wants. Future planning can be done at various transition points in a person’s life. Most often, it is used during the transition of a person with IDD from a family home to a new living setting, and in transitioning caregiving roles from aging parents to siblings.

Future planning is important because it can bring the whole family together for dialogue and decision-making, leading to better outcomes by intentionally planning for the future (Heller & Caldwell, 2006). These outcomes include:

  • Increased self-determination: The future planning process can help people with IDD get the information and support they need to make choices about their lives.
  • Decreased caregiver burden: When families plan for the future, parents often feel less worried about their caregiving role and their son’s or daughter’s future.
  • Increased plans made: Participation in future planning can lead to better preparation, including more specific residential plans, establishment of special needs trusts, and completion of a letter of intent that serves as a roadmap for the future.

However, research shows that often families do not plan for the future (Burke, Arnold, & Owen, 2018; Heller & Kramer, 2009).

Barriers to Future Planning

A number of barriers prevent families from future planning:

  • It requires parents or other older family members to acknowledge their own mortality, which understandably provokes anxiety and is highly emotional.
  • Many families do not know where to start and do not have information about potential options to consider for the future.
  • Families may think that if they do not have financial resources, then there is no point in planning.

Although many families are not intentionally talking about the future, parents and siblings are often thinking and worrying about it. For instance, one study has found that most caregivers have serious concerns about the future; one of the most common concerns is that a family member with IDD will have to live somewhere they do not want to live, such as a nursing home or institution (Anderson et al., 2018). Unfortunately, more than half of families in the study also had no plan in place for what will happen when the caregiver either passes away or is no longer able to provide care. Talking about the future can help alleviate stress by getting issues out in the open and making sure people know how to prepare for the future. There is no easy way to break through these barriers, but being aware of them and even naming them within your own family can help.

Although many families are not intentionally talking about the future, parents and siblings are often thinking and worrying about it.

Sibling Role in Future Planning

The role of siblings in the future planning process can vary depending on the person and the family. Siblings are not always involved in the planning process, even though they often play an important role in the future care and support of their brother or sister with IDD. Parents often feel that they do not want to place that responsibility on their other children, yet, siblings often want to be more involved in the decision-making process. Starting the difficult dialogue about the future is often the hardest part. Once the conversation begins, it can gather momentum for more discussion over time. Some of the ways that siblings can start the conversation are the following:

  • Talk to your parents about why planning for the future is so important. Tell them how it could help you, your sibling with a disability, and the whole family. Be honest about your hopes and your fears.
  • Think about the role you may be willing to play in the future. What information do you need to help you with this role? Also, be clear about what responsibilities you do not feel comfortable playing in the future.
  • Think about the people in your brother’s or sister’s life who should be part of the conversation and whether you should all talk as a group or talk with some people individually. Make sure you talk to your sibling with disabilities about what it means to plan for the future. Give them time to think about ideas ahead of time and prepare for the meeting. Think of strategies you may need to use to include your sibs in the conversation. For families that are spread across the country and world, you may need to connect some people by phone, Facetime or Skype.

There are various aspects of future planning for families to consider, and how to navigate the complicated and fragmented system of supports and services. In the next sections are four key areas to consider: Legal and Financial, Housing Supports, Caregiving, and Family Dynamics.

Many of the regulations and laws related to legal and financial planning vary by state, so find out the specifics in your state. Here are some key legal and financial concepts and resources for more information:

Surrogate or Substitute Decision-Making

This is when a person is designated with authority to make decisions on behalf of another person. All decisions should be made along with the person with disabilities and take their desires into account. Some forms of this decision-making authority include:

  • Representative Payee, a person or entity that is identified to represent the person with disabilities to help manage his or her government benefits.
  • Power of attorney, a designation allowing legal and financial decisions to be made on a person’s behalf. It can be customized to specific decisions and is distinct from guardianship, because it does not declare a person incompetent and can be revoked at any time.
  • Health Care Surrogacy/Proxy, someone to be appointed to make health care decisions for another person if they are not able or become unable to make these decisions alone.
  • Guardianship, which is established when a court declares someone incompetent and appoints someone else to make decisions on their behalf.

Supported Decision-Making

This is a process used to support an adult with disabilities to make his or her own decisions, and is a growing alternative to guardianship and other forms of substitute decision-making. The values and concepts of supported decision-making foster the self-determination of people with disabilities. Important aspects of supported decision-making include providing information in a way the person can understand, helping to discuss various options about a decision, and allowing the person to take the time needed to process the information before making a decision. There are a number of national resources that can help families learn more about Supported Decision-Making including the National Resource Center for Supported Decision-Making; the Self Advocates Becoming Empowered resource, My Voice Counts: Supported Decision Making, An Alternative to Guardianship; the Autistic Self Advocacy Network guide, The Right to Make Choices: International Laws and Decision-Making by People with Disabilities; and the Institute on Community Integration’s publication Impact: Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities.

Benefits for People with IDD

Understanding benefits for people with disabilities is important for the whole family in order to learn and decide which options are the best fit. Potential benefits individuals with IDD may have or be eligible for include the following:

  • Social Security Disability Insurance, which makes a monthly payment to some people with disabilities if their parents have paid into Social Security.
  • Supplemental Security Income (SSI), which pays benefits to adults and children with disabilities based on financial need.
  • Medicaid, which is a federal program administered by states (so each state has their own rules about who is eligible and what is provided) and provides health coverage and social and community supports to eligible low-income people with disabilities.
  • Medicare, which provides health insurance coverage for people age 65 years or older and people with certain disabilities.

Special Needs Trusts

These trusts can be set up for people with disabilities to set aside money without having it negatively impact the person’s benefits (which often have income and asset limitations). The Special Needs Alliance can help you find an attorney with expertise in this area.

Achieving a Better Life Experience (ABLE) Accounts

These are savings accounts set up for people with disabilities to set aside money without negatively impacting a person’s benefits. For more information visit the National ABLE Alliance, and the ABLE National Resource Center.

A multi-generational family, including three young school-aged siblings, their mother, and grandmother, sit on a sidewalk outside on a warm day in front of leafy green trees.

Planning for Housing

Finding affordable and accessible housing can be challenging, and each state has different options and eligibility for residential services and supports. The historical trend has been toward smaller, community-based settings, which are more cost effective and have shown to have better outcomes for people with disabilities. Through the Medicaid Home and Community Based Services (HCBS) waiver program, many states offer residential and employment services, certain therapies, adaptive aids and more. There are a few federal affordable housing programs that aim to expand housing opportunities for people with disabilities. The U.S. Department of Housing and Urban Development (HUD) has the following programs:

Planning for Caregiving

Caregiving often transitions from parents to siblings, especially as parents get older. Many siblings anticipate taking on greater caregiving roles for their brothers and sisters with disabilities in the future, yet they are not really sure what this means or how to prepare. Also, while parents often expect their other children, the siblings, to step into their caregiving role, information does not always naturally flow from parents to siblings. There is often a steep learning curve for siblings when they take on caregiving roles because siblings do not live and breathe the daily details the way parents often do. Future planning can help families share more specifically the expectations of the parents, the desires of the person with disabilities, and the roles siblings may or may not want to play. Starting the conversation and identifying the key people who will become future primary caregivers is essential. Then, give these future caregivers information to prepare them for their roles.

Family Dynamics Planning

When families talk about and plan for the future, there are lots of family dynamics at play. The future-planning process gets people talking about issues that can lead to different opinions and ideas, so conflict is a natural part of the process. Some people fear conflict because they think it indicates a problem, but a greater problem can occur when conflict is not discussed because it has no chance of being resolved. Healthy conflict involves sharing concerns and perspectives, and recognizing that not everyone will always agree. When planning a meeting, identify who will facilitate and how you will keep track of what you talk about. Some families rotate a family member to facilitate different meetings. Other families bring in an outside facilitator to help manage family dynamics and ensure everyone has a voice and a choice in the process.

Resources

Siblings and families may find the following resources helpful in taking their next steps toward future planning:

  • The Future is Now is an evidence-based curriculum created by the University of Illinois at Chicago’s Rehabilitation Research and Training Center on Developmental Disabilities that has been shown to have positive outcomes for families (Factor, DeBrine, Caldwell, Arnold, Kramer, Nelis, & Heller, 2010). It helps families start talking and planning for the future in a person-centered and family-centered manner. The curriculum is specifically designed to include people with disabilities as part of the process, along with siblings, parents, and anyone the person with disabilities wants to include. Organizations can purchase the curriculum and receive a train-the-trainer training so they can implement The Future is Now with families they serve.
  • The Arc’s Center for Future Planning has information and resources for families, and trains professionals working with families. There is also an online tool called Build Your Plan that allows families to work through a process, think about various areas of planning and get the information down in writing.
  • Charting the LifeCourse is a guiding framework with tools to start conversations and plan for the future, especially during transition periods. It was originally developed by families, for families, by the staff and stakeholders of Missouri Family to Family, which is housed within the University Center for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) at the University of Missouri–Kansas City Institute for Human Development.
  • The Sibling Leadership Network provides information on disability services and supports, sibling concerns, and the latest in sibling research, which can be helpful in developing future plans.

Key Questions for Siblings to Consider...

What barriers make it hard for your family to plan for the future?

Have you shared your thoughts with your parents about planning for the future? Have you asked your brother or sister with disabilities what he or she may be thinking about the future and what their desires are? If not, how could you bring this up and begin the conversation in your own family?

What ways can you support your brother or sister with disabilities to make decisions?

What role do you want to play in providing support and possibility caregiving for your brother or sister with disabilities in the future? 

References

  • Anderson, L., Hewitt, A., Pettingell, S., Lulinski, A., Taylor, M., & Reagan, J. (2018). FINDS family and individual needs for disability supports community report 2017. Retrieved from Retrieved from https:// thearc.org/wp-content/uploads/forchapters/FINDS_report-2017-FINAL-VERSION.pdf

  • Burke, M. M., Arnold, C. K., & Owen, A. L. (2018). Identifying the correlates and barriers of future planning among parents of individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 56, 90–100. Retrieved from https://doi.org/10.1352/1934-9556-56.2.90

  • Factor, A., DeBrine, E., Caldwell, J., Arnold, K., Kramer, J., Nelis, T., & Heller, T. (2010). The Future is Now: A future planning training curriculum for families and their adult relative with developmental disabilities (3rd ed.). Chicago, IL: Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago.

  • Heller, T., & Caldwell, J. (2006). Supporting aging caregivers and adults with developmental disabilities in future planning. Mental Retardation, 44, 189–202.

  • Heller, T., & Kramer, J. (2009). Involvement of adult siblings of persons with developmental disabilities in future planning. Intellectual and Developmental Disabilities, 47, 208–219. Retrieved from https://doi.org/10.1352/1934-9556-47.3.208

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