His struggles are many, and the system is a challenge
About two months ago, I had the greatest experience of my life.
I have a deep love and strong desire to serve those with disabilities and their families.
This experience was with a 55-year-old man with disabilities who lived alone.
For the sake of his privacy, I’ll call him, Larry.
Where did this all begin?
Over 40 years ago, shortly after the birth of my healthy, eight-pound son, our family changed forever.
Ten months later, when I delivered twin baby girls at 25 weeks gestation, my life, and our family life, took a new direction.
Fortunately, our small family was living in California, where services were offered for those with special needs, in advance of the laws for waivered funding, such as IDEA, EI, ISL’s, PT, OT, music, art, and behavior therapies.
Big Mack and Little Mack were the babies’ names, according to the NICU nurses.
The sweet baby girls, Kelsey and Kristin, had brain bleeds, necrotizing enterocolitis, ROP, heart murmurs, and required multiple transfusions, until Kristin passed away at five days old.
Kelsey, Big Mack, continued forward where Kelsey and I would become a strong pair of advocates for special-needs families everywhere they lived, in California, Indiana, Arizona, North Carolina and on ...
So where are we now, over 40 years later?
We are loving people like Kelsey and their families. I call them “my families.”
We know the hardship and pain. We know the appointments. We know the red tape. We know a lot.
Many special needs’ families, like us, care for a family member with disabilities.
Many of these family members have developmental disabilities (autism, Down syndrome, CP, etc.), traumatic brain injury, physical disabilities, or suffer from a newborn or age-related condition.
Kelsey and I know the journey.
Because these individuals are living longer, their parents and caregivers are older, and have numerous challenges in common.
They have fixed incomes and care for their loved one full time. Many are worn out, exhausted, from years of providing daily care, medical support, and protection for their loved one.
All are looking for resources.
A number of families have babies and many have adults, both requiring round-the-clock care.
During the past decade, many of the children and adults have moved home, after living in state facilities or nursing homes for years.
Some are nonverbal, physically or emotionally needy, and cannot live independently.
So what did we do two months ago?
A local Jackson County bank phoned me about a customer they had named Larry.
Larry had disabilities and lived alone. Living alone without support was not his or his family’s life plan for him. His father died. Then his mother suddenly died.
They had left Larry a small amount of money, which was gone when his 20-year-old car broke down.
Meeting with him and listening to his concerns and needs, I could see an obvious disability.
Not that I’m the authority. However, after reading a few bits and pieces of his life on paper, it was evident.
However, the key to many services in this world is eligibility for Social Security disability. To open the doors of state and federal services, there must be confirmation of the disability on paper.
And Larry didn’t have one. His mom and a neighbor had repeatedly applied for SSI but with no success.
Many applications were left unfinished for decades.
So I added Larry to my care and advocacy and for four years, applied for every service, system and assistance out there.
This was not easy because after the question, “Is Larry on Social Security disability,” they shut the door.
We couldn’t even get his school records, which were in California from 40 years ago.
Next week, Larry, part two.
Diane Mack is coordinator of Putting Families First, Jackson County's Family Week Foundation. Email her at Director@jacksoncountyfamilyweek.org.