Katie’s Story—Part Two: ‘County Funds Were Critical To Install The Right Stairlift’
Smart tips for navigating the maze of personal disability benefits.
In an earlier story on CentSai, Katie shared how she—with the support of her family—navigated the challenges of financial empowerment while being physically disabled. Here is some advice from her parents on how they rally around their daughter.
Assemble a Team
Katie’s parents recognized early on that they could not provide everything on their own for their daughter Katie. Katie was diagnosed with congenital muscular dystrophy (CMD) at age four. In addition to enlisting the medical support of doctors and nurses, Katie’s parents maintained relationships with her Medicare caseworker, teachers and school administrators, and a county caseworker.
County funds were critical to make changes like automatic door openers, a stair lift in their home, and the equipment to retrofit their van with a wheelchair lift. Her Medicare caseworker made sure that Katie would permanently qualify for Medicare assistance by properly documenting her disability. The case worker also kept them informed of legal limitations. He gave them resources that Katie otherwise would not know about.
If you are interested in helping someone with a disability succeed, knowing and becoming part of their team is a great step.
If you are a young adult learning to navigate life with a disability, recognize that your team will be vital to your ability to succeed as an individual.
Manage Your Deadlines
The majority of funding for Katie’s care comes from either private insurance or Medicare assistance. As a result, Katie and her parents learned early on that the key to dealing with bureaucracy is to manage deadlines early and often.
While Katie’s parents managed this for her as a child, Katie has taken up the task with gusto. I have literally never met anyone quite as organized as Katie. Nor anyone quite so dedicated to understanding exactly what needs to be done to maintain funding for continued medical care.
Manage Your Income and Assets For the Long Run
It has been just two years since Katie started work as a data analyst. But she is already thinking about how to manage her income and assets for the next several decades. Katie is an avid budgeter.
She keeps her spending low by sharing her apartment with a roommate. In addition to that, she also doesn’t own a car. She estimates it would take $60K for her to create a disability-enabled car. It helps to live near her work. Also, she can take public transit or convince her family to give her a ride when she needs it. She keeps her medical expenses lower by taking full advantage of the assistance programs available to her.
One of the most important considerations for Katie is how to maximize her earnings and savings without losing access to Medicare coverage. Katie estimates that the services she receives from Medicare assistance are worth at least $50K per year. But she will be disqualified from Medicare Assistance if she earns more than $65K.
As Katie advances in her career, she will need to carefully manage her compensation. Otherwise, she might risk losing access to Medicare. While she is still in the brainstorming phase, she expects that she’ll need a solution in the next year or two.
Outside of managing her income, Katie has considered placing her assets in a trust and giving her sister rights of trustee. Katie does not expect to be able to work past her late forties. She may want to be able to receive Supplemental Security Income (SSI) on top of Social Security Disability income. But she won’t be able to receive such income assistance if she has more than $2000 in assets. If this looks like a good option, she and her family will work with a lawyer or a certified financial planner to confirm the details.
It is very difficult to predict how Katie’s life will play out. But she and her family are committed to helping her live a high quality of life that maximizes her independence. Katie has structured her life and finances in such a way that her disability cannot hold her back.
By living below her means, understanding the resources available to her, and creating a supportive network, Katie lives a financially empowered life now. She plans on continuing on that path as long as she can.