Planning For Your Child with Special Needs
Are you a caregiver or parent wondering how to plan for your child with special needs as adulthood approaches? Don’t worry; you’re not alone. I spoke with Eilleen Kalman, lead professional for the Joint Services for Special Education in Mishawaka/Penn-Harris-Madison School Corporation, LOGAN Resource Specialist Leanne Suarez, and Family Advocate for the Arc of Indiana Brian Replogle for information, advice, resources and tips on planning for adult children with disabilities.
What’s the first thing a parent should do to plan for their loved ones?
It’s unanimous: apply for the Medicaid Waivers for Home and Community Based Services! You can never apply too early for this long (15+ years) waiting list. “Indiana’s Medicaid Waiver Program allows Medicaid to fund services for individuals with disabilities in their own homes or neighborhoods instead of in Medicaid funded facilities,” Brian Leplogle explains. Contact the Arc of Indiana or the Bureau of Developmental Disability Services soon for further, up-to-date information, (especially in case of changes) or in order to be placed on the waiting list to receive services by the time your loved one reaches adulthood.
“However, It’s also important to know that Medicaid, Medicaid Waivers and Social Security have savings limits in order to maintain eligibility,” Brian adds.
“Generally speaking, the Arc advocates refer to the limit as $1500, and slightly more for Social Security. Furthermore, because of these income limitations, families need to inform other family members and friends to not directly donate or bestow inheritance to their loved one with disabilities – this would put their loved one at risk for losing their benefits.”
For more on setting up financially safe donations, see below.
What community resources are available for children and adults with disabilities?
Community resources are wide and varying. Leanne, Eilleen and Brian gave us a list of their favorite community resources, though Brian quickly notes, “The best resources can be different for every person. The best thing a caregiver can do is interview them, visit their facilities and meet their staff where they are working.” He adds, “Ask lots of questions and gauge how the staff interact with their clients. Only the caregiver is going to be able to determine who will work best with their loved one. You’re the expert pertaining to your loved one.” Trust your gut and keep your specific circumstances in mind when skimming the list below.
LOGAN Center: LOGAN Community Resources, INC assisted living and day programs, advocacy, recreation, residential and LOGAN industries, Best Buddies and Super Sibs. (logancenter.org)
Children’s Dispensary: social, recreational and educational programs for children, teens and young adults. (childrensdispensary.org)
Hannah and Friends: funds quality of life grants for low and moderate-income families that care for children and adults with special needs. Provides funding for the construction of a residential home community for adults with special needs. (hannahandfriends.org)
Michiana Down Syndrome Family Support and Advocacy Group: provides ‘mini-grants’ and scholarships, recreation, library use, conferences and support groups. (michianadownsyndrome.org)
Arc of Indiana: information, resources, advocacy, help with financial planning and paperwork, resources, Medicaid and more. (arcind.org)
ADEC, Inc: provides employment services, Supervised Group Living, Supported Living, Day Services and Guardianship Services. (adecinc.com)
Family and Social Services Administration, Division of Disability and Rehabilitative Services: Apply for Medicaid Waiver and Social Security Benefits. Keep up-to-date on changes to applications, new resources, and forms. (in.gov/fssa/2328.htm)
How do schools factor into all of this?
School resources provide services to students until a certain age, Eilleen explains. “When a child turns fourteen, their Individual Education Plan shifts focus towards transition planning for education, employment and independent living.
“If the child won’t receive a High School diploma, schools provide educational services during the school year until the end of the year the child turns twenty-two. The goal for students who exit that program is to eventually have paid employment through the Office of Vocational Rehabilitation when possible.”
The Office of Vocational Rehabilitation works to match individual skills to job placement and provides the adult with job coaches. While students in school programs may be placed in volunteer jobs, the Office of Vocational Rehabilitation will only support paid employment.
And if schools are no longer an option, but the families require some day services in a school-like atmosphere, Leanne notes that LOGAN offers recreation programs and adult day service.
And the big one: how can caregivers plan for the day they are no longer here?
“First of all, parents and caregivers need to be thinking about guardianship when the individual is fourteen, because when a child turns eighteen, they are by default emancipated unless the parent gets guardianship.” Eilleen advises.
“LOGAN also provides adult group homes,” Leanne says, “and LOGAN Adult Protective Services can sometimes step in and be advocates for the child. LOGAN can provide help to individuals with finances, living situations, advocacy and guardianship, depending on the specific need.”
But LOGAN refers to the Arc of Indiana’s seminars and resources concerning finances, so I spoke again with Brian for his advice. He speaks directly to savings.
“To protect and secure savings and income for a loved one, establish a Special Needs Trust.” Brian says. “This is designed to legally remove inheritance, income and sometimes property and possessions from the Medicaid and Social Security eligibility equation. By having a Special Needs Trust established, a caregiver can safely leave behind money from life insurance, pensions and various donations without risking any benefit loss.” Special Needs Trusts are very specialized financial tools, so verify that a financial advisor or bank has experience writing Special Needs Trusts, because as Brian says, “a simple mistake can create major problems for your loved one after you’re not around to fix it.”
The Arc also offers The Arc Master Trust I and II. “The Trust I helps families provide for the financial future of their loved one without affecting eligibility for government benefits such as SSI, Medicaid, Medicaid waivers and residential programs.”
The Arc’s website states, “while Trust II allows people with disabilities to fund their own trust – often with funds received from inheritance, social security, or a personal injury settlement – allowing them to maintain eligibility for government benefits.”
However, Brian recommends researching what tools will work best for individual situations. And remember, whatever you choose, make sure to inform anyone who might leave an inheritance or donation of your plans, so they can donate without jeopardizing your loved one’s benefits.
What last tips do you have for caregivers in dealing with this process?
- Tip #1: “It’s so helpful for individual to transition prior to the traumatic experience,” says Leanne. “If possible, allow them some time in a new living situation first.”
- Tip #2:“I always want families to think about the whole individual,” Eilleen says, “which is more than vocation, finances, doctor appointments, etc. Plan social activities, leisure activities, hobbies… make sure you’re looking at the whole gamut of what it means to be a happy human being.”
- Tip #3: “If your child with disabilities has siblings, don’t just expect the siblings to care for the individual after you pass.” Eilleen cautions. “Include siblings to the fullest extent that they want to be, but don’t just assume they will be the provider.”