As children with disabilities enter their teen years, parents need to begin to plan for the future.
Figuring out next steps, from where they might work to where they will live, takes careful planning, due diligence and an understanding of Maryland disability laws. The Baltimore Jewish Abilities Alliance (BJAA) is an excellent resource, offering various workshops and providing a checklist of what to think about during the transition process.
Recognizing that finding the right employment opportunity for a child with a disability takes time, Susan Kaufman, mother of two children with disabilities and a special education teacher, actively began pursuing employment options several years before her children graduated. She visited work sites, talked to professionals and met with service coordinators who scheduled tours for her.
As a mother and a teacher, one of the things she learned during this process is that parents need to be realistic about the kind of job that best suits their child, based on his or her functioning level. “Many individuals with disabilities, no matter how smart, may not be able to handle a lot of responsibility, which often breeds stress. Realize that’s fine. It’s more important that he or she likes the job and is happy.”
If possible, build the skills needed to succeed while they are in school. Her daughter gained invaluable experience through a work study program with ARC of Baltimore. Parents of young adults with disabilities should also explore community college programs which often offer separate tracks for students with disabilities.
And other programs, such as the one at BWI Marshall Airport, offer individuals with disabilities a chance to work in a variety of settings so they can discover where they are best suited.
Many adults with disabilities can live on their own, with accommodations, and parents should begin looking into options when children are in their teens. Jewish Community Services (JCS) can provide assistance with independent living skills, including shopping, driving to appointments, paying bills and using transportation services.
When considering living arrangements for an adult child with a disability, know that CHAI: Comprehensive Housing Assistance Inc. will subsidize the cost of safety equipment, such as grab bars, accessibility modifications, including ramps, and assistive devices in area homes (see briefs, page 6.)
In addition, buying or renting a house on the MTA Mobility Line makes getting to work easier.
“I was a nervous wreck at first,” recalls Susan Kaufman, when her daughter started using MTA Mobility. “But we preprogrammed phone numbers in her phone in case of an emergency, and I was reassured by my case manager that she has the tools to know what to do.”
Another housing option is public housing, which often has a long waiting list and an extensive application process. JCS case managers can help adults with disabilities apply and can also assist in finding the right building in the right area for them.
For those who cannot live on their own, there are residential housing units, although in limited supply. Jewish Community Services provides residential living in nine professionally staffed homes, Alternative Living Units (ALUs), in northwest Baltimore City and Baltimore County communities. Each is home to three adults with developmental disabilities.
According to Maryland law, adults with disabilities — even those with developmental or cognitive challenges — have the right to make as many decisions as they have the capacity to make. According to Attorney Sharon Krevor Weisbaum, who recently held a workshop for the BJAA, state law allows family members to make health care decisions for individuals who do not have decision-making capacity without establishing guardianship. State regulations provide room for parental and other family member involvement within a team decision making process for other areas of concern.
If decisions cannot be made without guardianship authority, Krevor Weisbaum suggests considering a limited guardianship for a specific purpose. There are three types of guardianship arrangements. A limited guardianship authorizes a guardian to make decisions for a specific, time limited purpose; a general guardianship authorizes the guardian to virtually step into the shoes of the disabled family member and make decisions on his or her behalf; a guardian of the property authorizes the guardian to make decisions relating to financial matters on behalf of the disabled family member. In most circumstances obtaining representative payee status through the Social Security Administration will provide sufficient authority for what is needed to take care of SSI-related financial matters without resorting to a guardianship proceeding.
If a guardianship arrangement is established, parents, while they are still healthy, should think about who they would want the Court to select as a successor guardian when they become unable to continue in this role. This should always be a conversation, if possible, with the individual with a disability, who should have input. If considering a sibling without a disability, they too, should be consulted. Never try to force someone to take on guardianship if they he or she is not comfortable doing so.
Parents and/or guardians should create a financial plan for children with disabilities so that they have the financial support when parents are gone. According to the BJAA website and the Maryland Developmental Disabilities Council’s document, Planning Now, parents should begin by asking these questions:
- What supports will there need to be for your child to help him/her have the life you envision?
- How will he/she receive needed support?
- How will the cost for support be covered?
- Do you have other children, and if so, what are their current and future needs?
- What assets do you want to leave to your child with a disability and/or to your other children?
It’s important for families to consult with an attorney who has expertise in special needs planning. The law is complicated. For example, says Attorney Jason Frank, there are seven legally distinct special needs trusts in Maryland. Two are designated for a disabled individual’s money and one of those can only be created by a parent, grandparent or court, not the disabled person.
The other five trusts include: one specific to the parent of a disabled child, one used most often for a disabled grandchild, one created by a will and the remaining two have consequences if a parent becomes ill.
Frank is also past president and incorporator of the First Maryland Disability Trust, Inc. which was created several years ago to protect individual’s assets and income from being counted in determining eligibility for certain public benefits, such as SSI or medical assistance. Funds from this pooled asset special needs trust can be used for items not covered by benefits, including travel, education and dental care. Currently, there are two trusts within the Maryland Disability Trust, one for the disabled person’s money and the other for parent or grandparent to fund the disabled person.
“It’s a really valuable tool that can be used both by people with disabilities and relatives of people with disabilities to ensure qualify public benefits and have funds to supplement those benefits while receiving professional trustee services,” he says.
For more articles on disabilities, click here.