Care Advocacy Services: A Case Study

Donald and Shirley engaged Hickman & Lowder to draft their estate plan with special needs considerations in the early 1990s.  At that time, their daughter, Angela, who has a developmental disability, was living with them and receiving minimal benefits from the government.  Donald and Shirley put a trust in place to provide for Angela after they both were gone.  When they put the trust in place, they wanted their estate to be divided equally between their three children, with Angela’s share to be held in a third-party discretionary trust.  They named Angela’s older brother, Kurt, as the Trustee and they designated Angela’s sister, Katy, as her “beneficiary advocate,” which is someone who is designated to look out for Angela and her personal needs.  After Donald and Shirley signed their trust, life moved on for the family.  Angela qualified for SSI and Medicaid, grew up, and eventually moved out on her own into an apartment, where Donald and Shirley provided her with all the support and help she needed.  About the same time, Angela qualified for a Medicaid Waiver, which provides aides and services administered in her own apartment.  Kurt moved to Chicago, where he is an accountant, and Katy got a job as a teacher in Charlotte, North Carolina.

Late last year, Donald suffered from a stroke and needed to move to a nursing facility.  As part of the plan to qualify Donald for Medicaid, about $200,000 was deposited into the sole benefit trust for Angela.  Shirley then started exhibiting the early stages of Alzheimer’s disease and has been struggling to ensure that Angela is being taken care of in her apartment.  Shirley is up at night with anxiety about how Angela will make it when both she and Donald are gone.

Kurt and Katy were discussing what to do and contemplated having Angela move to Chicago or to Charlotte with one of them, but there were practical and logistical obstacles that seemed to pop up after every suggestion.  Angela has Medicaid Waiver services and, she has regular and attentive caregivers.  Kurt and Katy worried about how Angela would cope with changes to these services resulting from a move.  As Trustee, Kurt knew that his mom and dad put the money aside for Angela in a trust so that she could continue to live her best life, and preferably, at home where she has always been.  But Katy knew that money only goes so far and that Angela needed someone there to help her with coordinating benefits, ensuring that caregivers were showing up on time, helping with personal needs, and someone close by to take care of her if there was an emergency.  Both Kurt and Katy worried that if Angela needed to have a handy-man out to the apartment to work on something, that she could be scared or feel threatened – and being so far away with no local supports made Kurt and Katy uneasy.

When Kurt and Katy brought up the options to Shirley, Shirley reached back out to Hickman & Lowder, and the three of them learned about Care Advocacy Services – a combination of care coordination and legal services that could provide Angela with the support and protection she needed to remain in Cleveland, in her home, and continue to live her best life.

After agreeing that the additional support offered by Care Advocacy Services was just what they needed, a family meeting was held to review Angela’s current legal, financial, and care status.  They discussed their goals for the future of Angela’s care, taking into account Angela’s preferences.  They talked about the importance of advance directives and stating Angela’s wishes, as well as giving her brother and sister decision-making ability on her behalf should an emergency arise.

The Hickman & Lowder Care Coordinator then went to Angela’s apartment and completed a full assessment of her current care needs and determined her level of care.  A list was compiled of  service providers who were involved in her day-to-day care, including their payment source.  One of the Care Coordinator’s goals of the assessment was to start to get to know Angela.  By spending this time with Angela in her own apartment, she would hopefully build a rapport in order to make Angela feel more comfortable if needs arose in the future.  The information gathered during the assessment is essential for the Care Coordinator to assist Angela in the immediate future, as well as when there is a change in her care status.

The Care Coordinator also reviewed what benefits Angela is currently receiving in order to investigate if additional resources are necessary.  With ongoing involvement, these benefits can be monitored to make sure they remain in place during redetermination periods, as well as connecting her to new services as she ages.

The Care Coordinator could now be someone who either Kurt or Katy could call if they have concerns about their sister or any of her care providers.  For example, if her aide hasn’t shown up on time over the past few shifts and Angela is hesitant to report this to her case worker, her Care Coordinator could handle this problem for her on her behalf.  Or, if there is a need for a new provider to come into her home, her Care Coordinator could be there with her to provide backup support if and when she is uncomfortable.  Her Care Coordinator could also participate in annual ISP meetings to advocate for Angela.   Having Care Advocacy in place ahead of time gives the Care Coordinator the necessary information to respond more efficiently should needs arise in the future.

Angela’s family has peace of mind knowing that Angela will receive the care that she needs as she ages.  By establishing a trust for her benefit, they have made sure that she will have adequate financial resources when her parents are gone.  Kurt and Katy have taken over responsibly for Angela’s care while living out of state and they know that her care will be monitored by her Care Coordinator—someone she trusts and who makes her feel comfortable.  As Angela’s needs change, they also know that her eligibility for public benefits, legal options, and service providers may change too.  They are ready.  By having Care Advocacy Services in place, Angela’s Care Coordinator and her attorney will work together to monitor her well-being and help her achieve her goals.

Posted in Blog, Children with Special Needs.