by Britta Nieman
When I started to seriously think about the day my parents will no longer be around to care for my brother, I realized there was a lot I needed to know. There were also things that I didn’t even know to ask about.
Having a conversation with my parents about the future was not easy, but once I identified some specifics, it started to feel less overwhelming. I also like to think it helped give my parents some peace of mind to have some planning in place.
There are going to be individual variations in what topics to cover, but the following Ten Things to Talk About are ones I’ve found to be the most important. Even the ones that don’t seem as urgent, like building a community network, are just as vital as those that are related to financial and legal issues. In the end, what we siblings are trying to do is get a handle on aspects of our brother/sister’s life that help make it as stable, safe and fulfilling as it can be.
10 Things for Siblings to Ask About
1. Social Security, Supplemental Security Income (SSI), and Other Benefits
Supplemental Security Income (SSI) is the primary source of income for most adults with an intellectual/developmental disability, as well as children with disabilities whose families have low income. If either of your parents are retired or deceased, however, your sibling may be eligible for Social Security Disability Insurance (SSDI), which has a higher benefit level. Both benefits are administered by the Social Security Administration (SSA). Understanding your sibling’s Social Security benefits is essential. Not only are benefit amounts different (depending on the person’s circumstances), but eligibility for SSI is the door to other benefits, like medical coverage and DDA services. It’s also really important to know how financial assets can affect his/her eligibility and how to ensure they are not lost, such as through a special needs (supplemental) trust.
2. Special Needs (Supplemental) Trusts
A special needs trust allows your sibling to have resources beyond the limit set by SSI without risking his/her eligibility for benefits and services. Our state has a public/private trust called the Life Opportunities Trust (aka DD Endowment Trust Fund), which is administered by The Arc of Washington State and is for DDA clients only. You can also set up a special needs trust through an attorney. If your sibling has one, ask where it’s held and how the funds can be used to benefit your sibling.
3. Medical Information
With your sibling’s diagnosis, more than likely they have specialty doctors and/or a primary physician. Make sure you have all physicians’ contact information for your brother or sister for any health related situations. Keep a hard copy of your sibling’s diagnosis and medical documents, or know where to locate them. They will be needed to apply for government benefits and services, such as SSI, Medicaid/Medicare and DDA eligibility. You would be surprised how easy it is to lose track of these documents, so be sure to keep them safe and easily accessible.
4. Guardianship and Decision Making Alternatives
Find out if your sibling has guardianship. Not everyone needs it, and it is not automatically assigned at age 18. It’s a legal process that must be petitioned by someone (usually, by a parent or other relative). There are many alternatives to guardianship that help a person with financial, medical and other decision-making that do not require legal action and can be just as effective. It’s also a requirement by our state that these less restrictive alternatives be considered first. If your parents have set up a guardianship with an attorney, be sure to have the contact information and find out what would need to be done to transfer guardianship. The annual report paperwork is a very intimidating process but can be accomplished on your own, discuss with your parents on how to fill out this paperwork specifically for your sibling.
5. DDA Services for Help at Home, Work and in the Community
Find out if your sibling is a client of the Developmental Disabilities Administration (DDA). If so, does s/he receive a paid service?
- If your sibling is a paid client, get a list of the specific program and services (e.g., waiver program or Community First Choice) as well as the contact information for her/his case manager.
- If your sibling is a DDA client, but is not receiving a paid service, find out if a service has been requested or if any assessments have been done. Although there are limits to the number of people who can be enrolled in DDA waiver programs, there is no waiting for services through Community First Choice. It’s important to request what’s needed and to find out what’s available, but don’t let availability keep you from requesting what’s needed.
6. Emergency Plan of Action
Talk with your parents about what needs to happen in case of an emergency and you’re not at home or able to reach your sibling. What neighbors or community members would be able to go to their home and check in? Can the case manager help arrange for supports if you or other family members are not around to respond? It is important to have a plan of action for emergencies, as well as a simple plan for check-ins to avoid having a problem turn into an emergency.
7. Daily Schedule or Routine
Continuity and a regular schedule are crucial for a lot of individuals. Get to know your sibling’s daily routine, which includes both weekdays and weekends. What are things they’re used to doing or gets upset if a particular thing doesn’t happen in a particular way? Are there medications or other health-related practices that have to be taken or done at certain times? Have it written down and kept up to date.
8. Favorite Places
Participating in the community is an important part of your sibling’s life; like all things with someone who needs support, however, it takes a little extra effort. It’s really helpful to find out from your parents if there are places and events in your community where your sibling likes to participate (and on the flip side, does not want to be). Become familiar with the places and people your sibling thrives in and around, where they can be their best and happiest self. Also understand the locations and people to stay away from that provoke stress, and ways to support them to keep from getting overwhelmed or upset if those places can’t be avoided.
9. Community Network
There may be times when your sibling is on their own in the community—either planned or unplanned. Find out who is involved in their daily life outside the home (bus driver, store clerk, business owner, neighbors). Introduce yourself and let those people know how to contact you if they see something out of the ordinary (your sibling is alone, distressed, being bothered by someone, etc.). In turn, make sure your sibling knows who to go to if they need help and you’re not around or they can’t find you.
Having friends makes life richer for everyone, but it’s going to take extra support to help your brother or sister build and maintain these important relationships. Find out who’s part of your sibling’s personal life (people they like and those they might like to know better), and make sure they stay connected in as many ways as possible. Find out if there are established routines with friends, and initiate new ones by coming up with things they can to do together (going to a movie or a special event/activity in town). Little ways to keep those connections are by helping to remember and celebrate a friend’s birthday, and finding simple ways to stay in touch and involved. Without that extra support, your sibling can easily become isolated and cut off from a vital part of life.
About Britta: I am a sibling to a brother with Down syndrome. I come from a very family oriented background, so being so involved in my brother’s life is so essential to me. I currently work at The Arc of Snohomish County as the Leadership Development Coordinator/Adult Sibling Support. I enjoy every aspect of my job when working with individuals with Intellectual and Developmental Disabilities. It is definitely where my heart belongs.