Observations From Below: Silver Tsunami – Observations From Below

Tsunami
noun tsu·na·mi \(t)su̇-ˈnä-mē\
Simple Definition of tsunami
• : a very high, large wave in the ocean that is usually caused by an earthquake under the sea and that can cause great destruction when it reaches land

According to Merriam-Webster dictionary, the definition of tsunami is as outlined above. The largest tsunami on record was recorded in 1958 in Lituya Bay, Alaska. Tsunamis are catastrophic when they aren’t expected. Just like any other natural disaster, but when natural disasters are prepared for, even though they are bad, they are much more manageable.

The disability community has been warning about a tsunami of a different kind for a few years now. It has potential to be catastrophic in a different way than other disasters. It is often referred to as the Silver Tsunami. It refers to the fact that one of our largest demographic age groups is the baby boomer generation. These folks all have the potential to start needing some form of assistance, in the very near future.

Some of my colleagues in advocacy greet this as a positive development, because it will necessitate more accessibility and acceptance. What worries me is the developmental disability systems are already inadequate and have long waiting lists and massive shortages of care providers.

Current estimates suggest new Medicaid recipients can wait upwards of ten years for new waiver slots to open. It is hard to find accurate numbers for the whole state. There are long waiting lists in each county. They are somewhat ironically called “Registries of unmet needs.”

The Medicaid Home and Community-Based Services (HCBS) waiver program, called Innovations is authorized in §1915(c) of the Social Security Act.

The program permits a State to furnish an array of home and community-based services that assist Medicaid beneficiaries to live in the community and avoid institutionalization. The State has broad discretion to design its waiver program to address the needs of the waiver’s target population. Waiver services complement and/or supplement the services that are available to participants through the Medicaid State plan and other federal, state and local public programs as well as the supports that families and communities provide.

There are already untold numbers of people with disabilities that don’t have the personal care services and other needed services. It is estimated that there are54 million people with disabilities. That doesn’t include the aging baby boomers. There are only so many personal care professionals available.

There are an estimated 75% of people with intellectual/developmental (I/DD) disabilities that live at home and don’t receive any services. They are being cared by their families and other natural supports. Sixty-four percent of their caregivers are over the age of 55, which means that they themselves will likely need additional supports.

Another issue is our public systems aren’t really valuing the workers that do crucial work for people with disabilities. I’m lucky in that I qualify for at least two different state funded services. I get approximately 89 hours of supports each week. These people help me do things I can’t do for myself, like most daily living activities. I am dependent on them for getting out of bed, dressing, toileting, hygiene, bathing, food preparation and the like. and most importantly, they help me to participate in my community. It’s very humbling to be so reliant on other people.

It is important to have highly experienced people, so I don’t have to explain everything repeatedly. Also, the more experience they have, the more likely they are to take really good care of me because there is a trust relationship there. These valuable people must be trustworthy and reliable. We are in each other’s business, as we spend many times together. They have access to my person, to my personal belongings, accounts, my schedule, etc. It is a very intimate relationship. I have to be able to rely on them.

I spend more time on my relationship with my pca, than I do with almost any other relationship. I’m lucky to continue to have had them become natural supports even after they leave. I’ve joked several times that they don’t want to leave me, but as I mentioned it is very hard to keep them. There are policies that prevent me from paying them more than twelve dollars an hour (in my case.) It doesn’t matter what I want to do or how good they are. That is the maximum amount.

I find myself in an interesting situation because I am, technically, their employer, which in most ways is a good thing. I do want to have the control to bring in my own people, if I have to make changes and set my own hours, etc. The drawback is that the only benefit I can offer is my sparkly personality. I’m told I am the best boss ever. That’s not bragging, that comes from several sources.

My personal care assistants don’t stay because they can’t advance in their careers, they don’t get benefits or retirement and the average yearly salary is $21,790. That’s great for a college student, but not so great for established adults.

We need to think of a way to make it easier for pcas to stay in their jobs. There is a lot of high turn-over. Other common reasons people leave are personality conflicts, awkward turns in the relationship, they further their education, etc. It is like any other close relationship. There is always the possibility for conflict. In my case, it is always about the lack of money.

This is an urgent soon to be crisis. The field is only now starting to take action. This is on my mind because I think my current pca is getting ready to jump ship for purely financial reasons. She would take me with her, if she could. I’m always in the awkward position of hoping they get the job because I want them to success and hoping they don’t, so they’ll stay with me.

Know any good pcas?

That’s how I roll.