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| This goes for ALL caregivers! |
If parents and caregivers of people with disabilities were to log study hours while navigating the various information and systems related to disability, we would all qualify for college degrees. Some of us might even qualify for several PhDs. That is not an exaggerated statement. I cannot even begin to count the hours I have spent learning new things and doing paperwork related to loving and caring for someone with a disability over the last 30 years. And to be honest, I’m not even close to understanding it all. I am still learning new things as time marches on and new challenges come along. Some of the things we learn must be relearned over and over again as the rules and regulations change. This is a major frustration for caregivers. There is so much we have to know and stay on top of. As parents, siblings, or caregivers you will relate very well to this post. But, if you are not a caregiver and you just want to develop more empathy for someone you know who is, buckle up! It may seem repetitive at times, but that’s only because it is.
First, let me make it clear that we all – caregivers and people with disabilities – are grateful for everything we receive, whether it is information, knowledge, or benefits. We are grateful for the people who help us navigate it all, as well. At the same time, certain things are extremely stressful. So here goes!
It starts with learning about the disability: What is it and how will it affect life for the person and for the caregivers and family members? What is needed medically? Is it covered under our insurance? What will the co-pay and out of pocket expenses be? What is needed emotionally? What is needed physically? Are there devices or physical aids that can help? Are there grants available to help pay if insurance won’t pay? How do I apply for those grants? What are the rules for spending the money if we receive a grant? Are there medications? What are the side effects of those medications? How many times will we have to adjust or change the medication? Is there a diet that is best? Where can those strange foods be purchased? How can those foods be prepared? How much extra will this diet cost? How much extra time will this food take to prepare? Are there therapies to help with this disability? Which therapists are best? Should we leave all therapies up to the school district or get outside therapy, as well? What is the school district obligated by law to do? How do we ensure they do it? What is an IEP? How do we participate in writing the IEP? What should go into the IEP? How do we ensure it is followed? What can we do if it is not followed? Who can we turn to for help? How much will that cost? What is the ADA? What is IDEA? Can I use that to get what my child needs in school? (Absolutely!) How should I appropriately correspond with the school staff when there is a problem with the IEP or its implementation? What steps should I take if the school refuses to put something in the IEP that my child needs?
Are you exhausted by the questions yet?
Imagine actually researching the answers and then doing what needs to be done. As you research, more questions evolve. Paper work will be involved. Lots and lots of paperwork! If I had a nickel for each time I wrote down my son’s name, address, phone number, social security number, his disability, his surgeries, his medications, date he was diagnosed, things he is unable to do for himself, as well as mine and my husband’s information, we would be rich! Phone calls, driving, meetings, and waiting in reception areas are involved with implementing just about everything we learn.
All of this comes after you have received your honorary degree in vocabulary words, acronyms, and initialisms related to the disability. What does tactile mean? What does proprioception mean? What is Occupational Therapy? What is sensory overload? What is stimming? What is echolalia? What is auditory processing? How does that relate, if at all, to hearing? These are just a few of the vocabulary words I had to learn for my son’s disability. I’m sure there are just as many, if not more, for other disabilities. If you’re like me, you’ll want to know why, how, and who – if anyone – is to blame for this disability. So, you’ll research that to the best of your ability and come up with even more questions about religion, causes, preventions, and yes, cures because your heart is in a perpetual ache while doing all of this for your loved one.
Then there is the social aspect of living in the world with people with disabilities: What response should I have to people who make rude comments about my son? How should I deal with family members who just don’t get it? What is the politically correct way to address someone with…? Our feelings get hurt A LOT. We get insulted on purpose and sometimes accidentally. We cry in the shower, in our cars, in public restrooms, and sometime right out in the open because people can be mean and judgy.
In the interest of time and space, I will now ditch the questions and give you a brief overview of other non-degreed courses we must take. You can rely on your own questions as they pop into your head. Trust me, you will have many!
Low-income families who have children with disabilities under 18 years of age typically apply for SSI, which results in > paperwork (both gathering to submit and filling out new ones) > meeting with an SS employee > waiting for a response to your application. All families, no matter their income level will or should apply for SSI for their disabled child when he or she turns 18 > paperwork (both gathering to submit and filling out new ones) > learning the rules about family income and expenses > how much rent to charge your disabled child > grappling with that mentally because it may seem ridiculous > learning the difference between charging them “rent” and having them pay their “fair share” and how each will affect yourtax filing each year > understanding the future paperwork you will need to submit to the government each year for the SSI they will receive > understanding the asset levels they are allowed while receiving SSI > understanding your role as their representative payee > navigating the banking system to set up an account for them and you as rep-payee > once they have had it for a few years and you are comfortable, you will get some sort of letter that will send you into a panic because it threatens to stop the SSI if you do not comply with their request by a certain date > more gathering of paperwork > phone calls and/or visits to the office with paperwork in hand, waiting to be seen, only to be told they don’t need to see it > eventual relief that they get to keep their SSI (hopefully!).
Now, if your under-age child receives SSI, when they turn 18, they will lose their SSI in order to transition to SSI for disabled adults. Is this transition smooth? No. Why? No one knows. Should it be smooth? Yes. This results in a panic letter arriving in the mail (these letters usually come on Friday when you can’t really do anything about it) > phone calls > possible paperwork > possible meetings, which may require a few hours of waiting to get to speak with someone > possible delay in paying your household bills. As a parent or caregiver, you will not be informed of this need for a transition until it is too late, and they are at risk or actually thrown off of SSI. Why? No one knows. Maybe because the system is slow to catch things.
Keeping your disabled child on your insurance after age 26 (thank God it is the law now!) > paperwork (both gathering to submit and filling out new ones) > possible doctor appointment for your loved one so the doctor can attest to their disability > understanding if the insurance or the Medicaid is primary and remembering that. LOL! Then you get to deal with the insurance company because they refuse to pay for something they say they will pay for, or they say they are not sure who is primary and who is secondary, but they are the ones who told you in the first place that they are primary. UGH!
In addition to applying for SSI at 18, families should also apply for Medicaid for the disabled person even if the family can afford to pay their medical bills after insurance. Why? Medicaid Waivers, of course! They will need Medicaid in order to get a Medicaid Waiver. You have question about Medicaid Waivers now, don’t you?!
There are many Medicaid Waivers that could apply to people with disabilities. They all involve figuring out which one is right for your loved one > research > paperwork (both gathering to submit and filling out new ones) > which agencies need to be involved > more vocabulary words and initialisms to learn > new rules to learn to keep the funding > redetermination every couple of years because, apparently, a life-long disability could miraculously go away > inevitably, although you sent the requested paperwork via whatever means they wanted, they did not receive it or they received it but failed to check it into their system, so another panic letter will arrive from Medicaid with deadlines to meet because if you don’t, your loved one may lose their Medicaid and get kicked off their waiver and then you are really screwed > more paperwork > phone calls > possible meetings with extraordinary waiting room time, and if you speak to a different person they will have a whole new set of requirements for you because they understand the system differently than the last guy or gal you spoke to, but maybe you’ll get lucky and this one simplifies the process and puts you at ease (praying hands emoji!).
When the parent of a disabled person dies or retires, the disabled person gets put on Medicare, regardless of their age > More rules > more vocabulary > more paperwork > more phone calls > more panic letters arriving in the mail threatening to cut off their Medicaid if the spend down is not reached, which means they will lose their waiver funding, which means the family schedule will get completely thrown off and/or the disabled person will have no supports for their social life or their job. Even though this is stressful and completely unnecessary if things would have been explained properly at the start of all this, you would rather spend an extraordinary amount of time in a waiting room and energy to resolve it to avoid your loved one from losing their benefits.
Your career? Ha! If you have one, that’s another stress on you. Or, maybe you love your career and it helps you deal with everything else. If so, I am happy for you. Well done!
As caregivers, it is likely we are, by now, on depression and/or anxiety medication from managing all this with a perpetual heartache.
But wait! Some rules that you finally learned have changed… or acronyms, or initialisms, or you discovered that some initialisms have more than one meaning because they are represented by more than one agency, so now you get to try to keep those in your mind as you read endless pieces of information.
And did you apply for food stamps for your loved one when you applied for Medicaid? How’s that $12.00 a month helping out with your food bills? If they were awarded it, that is. They are not supposed to consider yourincome, but somehow, they figure out a way to get it in there for some households, but not others. Maybe this, too, depends on the employee you are dealing with when you apply. Who knows? There are social stigmas attached to these benefits that you must navigate in your mind. You know that your loved one cannot survive without these supports, or at the very least that your entire family’s quality of life would tank if they did not receive these benefits, but the world seems insensitive to that reality. Your friends and family are constantly calling for the government to cut the vital services without a thought to how it will affect your loved one and you.
Have you studied up on financial planning for the care of your loved one after you pass away? Wills, Trusts, Special Needs Trusts, revocable vs irrevocable, clauses, and wording it just right so they won’t lose their government benefits, naming a new guardian and someone to oversee the trust… And what if you don’t have anyone you can trust? Should you rely on a lawyer or a bank to oversee everything? Can you trust a total stranger who doesn’t even know your family?
How about guardianship of your loved one: have you applied for that? How does that differ from Power of Attorney? > Guardianship of the person or the estate or both > paperwork > meetings with lawyers > costs involved > going before the judge > annual reports to the judge > another deadline.
Where will your loved one live when you pass away? > CILA or family member > types of CILAs vs other housing > funding sources > rules and regulations for funding and for CILA > ensuring your loved one’s security > happiness of your loved one > ensuring appropriate freedoms for your loved one. If you do have family to step in when you’re gone, you feel like crap asking them because you know it’s a lot to ask.
Many of these questions you get to navigate while you yourself are aging, developing health issues, and/or slowing down. Fun times!
If your loved one is lucky enough to be able to work there are rules you will need to know about income levels, job coaching, discrimination laws, etc. I do not have an honorary degree in this area because Josh is not able to do conventional work. We have WorkerBee, though! And, that means I am managing his volunteer jo to keep him busy, like so many other caregivers do for their loved one.
Did I mention politics? No? Well then, let me just say this: Politics is the foundation that supports this entire building. Every single thing I wrote about is dependent on politicians who may or may not understand, give two thoughts to, or even care about our plight. So, when a parent or caregiver of a person with disabilities talks about politics, understand that we know this area well. We contact our representatives, even with all the other stuff we have to do because our loved ones depend on us to stay informed and involved and to help keep this building standing.
There is help from various agencies and I, along with other caregivers, have a never-ending supply of gratitude for them! Support groups, both online and in person, nonprofit organizations, information sites, family support, politicians who fight for us, everyone and anyone who helps us out in the biggest and smallest ways, all mean a great deal to our community. There are people who have made paid careers out of helping others in many areas of these systems and people who volunteer their time and energy to answering our questions and giving us support because they have been through it already. We are immensely grateful for those people!
Thank you, if you are a helper in any way.
We are also extremely grateful for all of the benefits from our government and from other organizations. We do not take anything for granted. We are grateful for the help we receive from all of the government employees who help us apply for these benefits and iron out all of the issues from the panic letters we get. Sometimes we do not treat them well. We are stressed when we contact them, but that is no excuse to treat another human being badly. I apologize for that on behalf of every caregiver.
Caregivers, I’m sure I probably left something out. Feel free to contact me at mindchange4all@gmail.com with information you want to see added here and I will happily oblige. Take care of yourself, Friend!
Check out my recommended reading post at the top of the menu. I hope this blog helps you to create a more peaceful life. Keep in touch with the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Write to me with your comments and questions at mindchange4all@gmail.com. I look forward to hearing from you.
