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40+ OVERVIEW As your son or daughter gets older, you're faced with a complex set of issues, concerns and emotions to navigate. No longer are your adult child's needs the only ones to consider. As you age, your needs are changing too.
Planning for a time when you are no longer there to support your son or daughter can feel so overwhelming, you may feel like putting it off. Just know that those who do plan for the future feel better for having done so. As you move through this guide, find what feels comfortable to you and begin with that. For many families, just getting help to sort through social security benefits is a big step. With your retirement, death or disability, your son or daughter will be eligible to receive benefits from your social security income as a disabled adult child, known as DAC.
If you do nothing else right now, listen to the options available to you and your adult child and consider connecting with other families who face similar concerns and issues.
WASHINGTON STATE DIVISION OF DEVELOPMENTAL DISABILITIES One thing that’s important to know is that adults over age 40 living with a family caregiver who becomes unable to continue providing care are typically considered a higher priority for services from the Division of Developmental Disabilities. As your son or daughter's situation and needs change, be sure to contact his or her D.D.D. case manager for a re-assessment to see if he or she has moved into a higher priority category.
While there are waiting lists for most non-entitlement services, there is no waiting for services such as Medicaid Personal Care, which can be provided in your own home or in another community setting such as an adult family home.
Eligibility for Medicaid Personal Care, or M.P.C. as it's known, is determined through a D.D.D. assessment provided by case manager. M.P.C. is an entitlement. This means that if your son or daughter is determined to need personal care, he or she is entitled to receive the number of hours assessed.
M.P.C. provides assistance with activities of daily living, such as bathing, dressing, eating, meal preparation and housework. M.P.C. can be provided in your own home by individual or agency providers who are contracted with the state. As a parent, you can also become an M.P.C. provider for your adult child.
Home and Community Based WaIvers Out-of-home community-based alternatives, such as supported living services, companion homes or group homes, are included on the division's home and community-based services core waiver. A waiver is an agreement to receive services in your own community rather than a state institution.
The core waiver provides up to 24 hours a day support and supervision in an apartment or home that is typically shared with 2 or 3 other people with similar needs. Once someone is on a waiver, they are entitled to have all of their health and safety needs met within the scope of that particular waiver. The core waiver offers a greater number of supports for individuals who need more significant support and supervision.
Waiver enrollment is limited, however, which is why there are so many people waiting for these services. If your son or daughter is not on a home and community-based services waiver, ask to have him or her added to the "waiver enrollment database," as a way to be on an identified list for waiver services.
Other out-of-home services include adult family homes and state-run residential habilitation centers. Adult family homes provide personal care and supervision in a licensed setting, but no habilitation or support to access the community. Residential habilitation centers are state-operated institutions founded before community alternatives were developed.
Besides the difficulty in arranging for your son or daughter’s services, many families find their greatest need is for benefits assistance. With changes in Medicare and Medicaid, in addition to social security reform issues, you may need help to sort through the implications for your son or daughter's social security benefits as well as your own.
Social Security If you are retired and your son or daughter is on Social Security Disability Insurance, or S.S.D.I., this means that he or she may be receiving health care through both Medicaid and Medicare. When people are eligible for both, prescription drug coverage is important to understand. Contact your child’s DD case manager for information about your son or daughter's coverage, or call the Social Security Administration toll-free at 1-800-772-1213 or visit http://www.ssa.gov/.
Another good resource for information on changes in social security, Medicare and Medicaid is your local area agency on aging, also known as “Triple A.” The number for your Triple A can be found in the blue pages of your phone book, listed under county government.
COnnecting with Other Families One of the best ways to sort through all of your options is to connect with other parents. Find out what they're doing, where they've been and what they've learned along the way. It goes without saying that every family is unique and everyone's circumstances are different, but talking to others may spark an idea that works well for you and your family.
You can connect with other families through the Senior Family Caregiver Support Project, which has coordinators in several areas of the state. They provide outreach, information, referral, coaching and direct advocacy for caregivers over the age of 60. Contact Parent to Parent toll-free at 1-888-754-8798 to find out if there is one near you.
SPECIAL NEEDS TRUSTS Other
considerations in planning for the future may include wills and special
needs trusts. One option for you to explore is the Life
Opportunities Trust, administered by the Washington State Developmental
Disabilities Council. This public/private partnership creates a
stable resource to enhance the quality of life for people with
developmental disabilities. For more information, call toll-free
1-888-754-8798 or visit
http://www.ddlot.org/. For other
options and information about trusts and wills, contact your local Arc or
Parent to Parent office.
ADVOCACY Just as with every other phase of your child's life, advocacy is vital – both your own and that of your adult son or daughter. Problems with services, limited funding, and long waiting lists can be solved with effective grassroots advocacy.
Local Arcs and parent coalitions are great resources for current information and connection with others who share similar concerns. They help improve the service system by advocating with a unified voice. Contact the Arc of Washington State toll-free at 1-888-754-8798 or visit http://www.arcwa.org/ to find out if there is a parent coalition or Arc chapter near you.
SELF-ADVOCACY It's especially important for your son or daughter to connect with peers by joining a self-advocacy group. It’s never too late for anyone to identify their interests, set goals and learn how to speak up for him or herself.
People First of Washington and Self Advocates of Washington promote self-advocacy in all areas of a person's life. In many parts of the state, they are creating self-advocacy chapters in high schools. For more information, call People First toll-free at 1-800-758-1123. In Pierce and Kitsap counties, contact Self Advocates of Washington at 1-253-597-3709.
Self Advocates in Leadership, known as SAIL, also offers many opportunities for people with developmental disabilities to shape the services and policies that affect their lives. For more information about SAIL, contact the Arc of Washington State at 1-888-754-8798 or visit http://www.sailcoalition.org.
It’s never too late to take charge and plan for the future. If you find yourself putting off planning, try wading in just a little. Begin with what feels comfortable; then gradually do a little more. Connect with other parents, learn about services, ask for help. It’s easier to plan ahead than worry about the future or face dealing with a crisis. You’ll feel better for having a plan in place.
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