I want to talk today about what it means to be an advocate for someone else. This ingredient comes in all shapes and sizes.
Just standing up for someone else can make us an advocate but today I want to talk about what it means to be an advocate for an elderly, disabled or ill family member or loved one.
This position is different than being their caregiver but it usually goes hand in hand.
When you take on the role of a caregiver, or have it thrust upon you, however you come by it, you usually have some idea of what you are getting into.
Although the caring may change and grow over time, you know that physically you are taking on the duties of caring for someone who can not care for themselves.
What you may not see coming down the pike is the advocacy role that will almost definitely be a part of this as well.
A person who is ill, disabled, or just getting up in age usually comes with Dr.'s appointments, Social Security, disability, county waivers, and insurance just to name a few. Navigating any one of these things can be a complete nightmare.
I have no idea how they expect an elderly, disabled or seriously ill person to be abl
e to handle all the ins and outs of these enormous entities. How someone battling a life threatening illness would even have the time or the energy, shouldn't they just be focusing on getting better?!
These companies have hundreds of employees handling each and every little detail as it comes into them. Yet they expect one little old man with dementia to be able to keep up? Or one developmentally delayed adult? Or how about someone battling stage four colon cancer? None of these folks could possibly handle the paperwork that comes in on a regular basis.
I feel like that is the whole point; for these folks not to be able to keep up so things fall through the cracks. So people fall through the cracks.
I have been a direct care advocate for my son, my husband and my mother in law over the years.
There is no way any one of them could have kept up with all the phone calls, paperwork and emails it has taken to keep the ball rolling on all the things.
When I talk with other advocates about all that we have to do just to keep the simplest things in place, we often wonder how those folks that don't have anyone standing up for them do it.
Just the amount of doctors appointments I made for my mother in law alone would have overwhelmed her. Not to mention making sure that her spend down was paid, her medicaide remained in tact, her SSI didn't fall by the wayside and all her prescriptions were refilled and picked up.
My son has had at least fifteen appointments just in the last three months. Along with waiver reassessments, MA renewals and SSI wage reports.
Along with all of his medical diagnosis' my son has severe learning delays. His short term memory is almost 'nil and he functions at about a 10 year old level on his best day. How in the world could he take care of all the things he needs to take care of just to keep his basic living needs in place? The answer is, he could not.
My husband broke his neck in 2019 and we had hundreds of thousands of dollars in medical bills to be submitted and resubmitted along with so so many Dr's appts and disability renewals. He just about died, yet he should have taken time from his recovery, to handle his paperwork?
Let's talk about money. The little tiny bit of money they get must be managed too. If they go over any number of tier lines, they will lose that teeny tiny bit of money.
Although my MIL never got a dime for her trailer home and the land it sat on, she gave it to her grandson, my husband and I had to pay a spend down for what the county anticipated she could have made had she sold the place. If the spend down wasn't paid she would lose her insurance and a portion of her SSI.
Although my son is able to work part time with the full time assistance of a job coach, each and every dollar he makes at his job comes off the top of his SSI stipend each month.
Although my husband is able to work part time, he can not make more than a certain amount each month or his SSDI will be cut off completely.
All of these quotas are put into place; some for good reason, some just cuz. However many folks would have no idea how to maintain all the different legalities. Therefore they would go over one threshold or another and lose everything.
These are just a few things a caregiver advocate needs to be sure to handle ON TOP of the actual physical caregiving duties.
It is tiring. I get worn out. I work in the field of caregiving but the advocacy part, the behind the scenes paperwork part is a whole other full-time job.
Sometimes I feel like from the minute I wake up until the minute I go to bed I have someone I need to call or email or a letter to write or mail.
I am so very thankful for my son's full time PCA we have on staff. She takes great care of Aaron for her 40 hours a week so I have time to do the behind the scenes things.
We also have a wonderfully big family who helps me so very much.
Thank you to you all!
I know others who are doing the same things I am. Some without any help from anyone. Please know you are not alone. We feel your stress.
I have found myself so angry I could scream. So upset I have tears rolling down my face, in trying to protect those I love.
So how does a person with a disability fight their disability and also fight those that are trying to strip them of the things they need to survive from day to day?
There are some wonderful advocacy services out there.
The Pacer Center
The Alzheimer’s Association
The Ombudsman for your city and state
Disability Attorneys
The American Association of People With Disabilities(AAPD)
The American Association of People with Disabilities works to increase the political and economic power of people with disabilities.
Department of Education
Offers programs such as the Client Assistance Program and the Protection and Advocacy of Individuals Rights Program
Association of Programs for Rural Independent Living (APRIL)
A national organization that advocates for independent living for people with disabilities in rural areas
Hammer
An organization that provides services for adults with disabilities, and advocates for home and community-based services
Disability Hub MN - Independence
An organization that focuses on self-advocacy
As an advocate you may feel that you are running in circles and getting nowhere fast. Do not hesitate to reach out to some of these folks for help whenever you need it.
Whenever you feel at the end of your rope, tie a knot, hang on and give them a call.
Comments