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Family Stories
“I can’t sleep at night because I’m so worried about what will happen to my daughter when I’m gone.”
See how Future Care solved this family's dilemma and helped them sleep at night. more
“My parents wouldn’t talk about what would happen to my brother; they always just told me to take care of him if anything happened to them. Now they are gone and I don’t know where to start.”
See how one loving sister’s call to Future Care helped provide a legacy of love for her brother Ted. more
“I can’t sleep at night because I’m so worried about what will happen to my daughter when I’m gone.”
Debbie was a 45-year-old woman diagnosed with Down Syndrome, Mild Mental Retardation and Obesity. Debbie had always lived at home with her parents; her mother was 76 and her father died about 8 years before the family sought help from Future Care Planning Services. The Service Coordinator from The Arc of Monroe County was very concerned that Debbie’s mother was growing more frail. They had to make emergency respite plans when she became ill and needed to be transported to the hospital by ambulance. Her mother recovered several times, and each time life resumed as if nothing had happened. Professionals close to the family were worried that another emergency was imminent and knew that something had to be done.
Debbie had 3 older brothers; one brother lived locally and the other two lived in different parts of the country. Concerned that their mother’s health was failing, they all got together and tried to persuade her to sell the house and move into an assisted living facility. That way Debbie could be placed in a group home where she would be well cared for and safe. However, their mother became angry and did not want to hear of any such plans. She was scared to death that everyone involved was trying to take Debbie away from her and didn’t want to talk to her sons.
The Service Coordinator solicited help from Future Care on talking with the brothers and their mother about their options. Everyone was concerned because Debbie was not able to get to her day program; since their mother couldn’t get out of bed to get her ready for the bus. Things only seemed to be getting worse.
The staff of Future Care Planning Services explained that we do not try to get anyone to do what we think is best, but only seek to educate the family on their options and assist them in implementing decisions. Debbie’s mother realized we were on her side and shared that she “couldn’t sleep at night because she was so worried about what would happen to her daughter if she were to die.”
Debbie’s mother and father were named as primary guardians 20 years earlier; standby guardians were family friends. However, the relationship between Debbie’s parents and those named as standby guardians had grown cold many years before. There was no plan in place for choosing Debbie’s legal advocate when her mother passed away.
Debbie’s mother handled all the finances. In fact, she had a joint account with her daughter; Debbie’s Social Security checks were automatically deposited. The Will her mother had was very old and named only the brothers as beneficiaries. Debbie had been disinherited on the advice of a lawyer many years ago. There were two Life Insurance Policies with a face value of $10,000 each; Debbie’s mother was the owner and beneficiary of both policies.
Future Care assisted the family in starting the guardianship process, which named the 3 older brothers in succession as standby guardians.
It began with Debbie’s mother signing a Power of Attorney, allowing one brother to become the Representative Payee for Debbie’s Social Security checks. This meant that she gave her son the power to make financial decisions on her behalf. Next she signed a Health Care Proxy, naming her son as the person who could make health care decisions in the event she could not. Future Care advised Debbie’s mother to update her Will to include Debbie by adding Supplemental Needs Trust language that would allow Debbie to inherit her share of the estate and keep her benefits without penalty. She also named her local son as Executor. During this process Debbie’s mother also signed paperwork that allowed the Service Coordinator to place Debbie on the waiting list for residential services. These were very big steps, especially for Debbie’s mother, whose worries lessened.
Several months later, Debbie’s mother was driving her to a doctor’s appointment when she became confused and upset. She got lost and they were involved in a serious auto accident; Debbie was shaken but unharmed. Unfortunately, her mother was taken to the hospital with back injuries and died a few weeks later from complications.
This could have ended differently had Debbie’s family not come to Future Care Planning Services. Her mother came to understand the need to protect Debbie; no matter what happened to her, Debbie would be taken care of. In the end, the brother was able to handle all finances for both his sick mother and Debbie. He was able to advocate for his mother at the end of her life. As for Debbie, the family sought an appropriate group home and got her into grief counseling. Today Debbie visits with her local brother and sister-in-law every week. Because the Trust was established, Debbie has money to go on vacation and buy the extras that her mother would have provided when she was alive. Debbie is doing well in her home and has lost weight due to the care and concern of the staff there.
Future Care Planning Services staff often make routine follow-up calls. During a call to Debbie’s brother who lives locally, he said, “I don’t know what we would have done without Future Care Planning Services to guide us. Thank you so much; my sister is safe and happy; we couldn’t have made the decisions we did without the incredible knowledge of the people on your team.”
“My parents wouldn’t talk about what would happen to my brother; they always just told me to take care of him if anything happened to them. Now they are gone and I don’t know where to start.”
Jenny made a call to Lifespan when her 79-year-old mother was diagnosed with liver cancer. She was worried about who would take care of her brother Ted when her mother passed away.
Ted was a 50-year-old male who had always lived with his parents. He had never been formally diagnosed with a developmental disability. Ted had gone to school through 7th grade until his father got him a job working with him at a food service company. Ted was gainfully employed for 30 years until he no longer was able to work due to a disabling physical condition; he could not read, but could sign his name. Ted was able to drive a car and recognized street signs. He was the primary caretaker of his mother since she became gravely ill and took her to all of her medical appointments. Ted also did the laundry, cooked simple meals and maintained the yard. Other than the neighbors who were friendly with the family, Ted had no friends.
Ted had a small pension, but was not receiving any public benefits. His mother had always handled his money. The family paid out of pocket for a basic health insurance policy, and Ted owned a life insurance policy, with his parents named as beneficiaries.
Ted’s grandmother died recently and he stood to inherit $50,000. His mother did not have a Will; the house was in her name and paid off but was in serious disrepair.
A member of the Future Care Planning Services team visited the home with a representative of the Aging Adults with Developmental Disabilities Program (AADD) from Lifespan. Upon arrival we met with Jenny, who was beside herself with grief over her mother’s illness. She was worried sick about what would become of her brother Ted.
It was apparent that no planning had been done on Ted’s behalf and the situation was very tenuous. We immediately made a referral to Eldersource in order to get a case manager involved.
The AADD Representative talked with the family about how a person with a developmental disability can become eligible for the AADD Program. Ted agreed that he would like to work with someone to find out about getting services for himself. However, he made it very clear that he would NEVER live in a group home.
AADD helped him become eligible for services through the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD). He remained home with support until an appropriate apartment could be found.
Future Care Planning Services continued to work with the family after their mother passed away. His sister established a Supplemental Needs Trust. This was to make sure that the money he inherited and his pension would be protected when he became eligible for Medicaid. Medicaid would help cover his health insurance and the cost of Service Coordination, as well as Residential Habilitation Services, allowing Ted to live independently.
Ted has Representative Payee services, which helps him budget his money. His sister became guardian and can now advocate for him in medical situations.
Today Ted has many new friends and participates in recreational programs regularly.
After their mother’s funeral, Ted and Jenny sent a card to Future Care Planning Services saying, “Thank you so much for helping us during such a difficult time; we don’t know what we would have done without you; we really appreciate all your help.”
