October 20, 2009
As a young adult, Lauren is currently receiving a level of support through self-direction that makes her life and that of her parents manageable. We have enough funding to hire three part-time caregivers to staff three different shifts over the course of a week. I would like to be able to pay them better. I would like to be able to offer them health insurance. (The health insurance offered by the fiscal intermediary is a PPO with no employee contribution – an expensive, impractical option.) But, Lauren’s funding doesn’t stretch that far. But for today...we’re OK. But what about tomorrow?
I’m a planner. I am constantly making lists and hate surprises. So, I am always thinking about the next step and planning for the inevitable in Lauren’s life. At some point, it could be tomorrow, it could be ten years from now, neither my husband nor I will be able to provide her care. The natural supports, the supports that are provided by my husband and I, which make Lauren’s life possible, are numerous and varied. They are the glue, the safety net, the framework of Lauren’s life. What are these supports?
1. Unstaffed hours – any time that a staff member is not scheduled to work is the responsibility of George and me. That includes staff vacations, their sick and personal days, and vacancies.
2. Housing – Lauren lives with us
3. Food – I purchase and prepare most of Lauren’s food. Lauren does not chew so everything she eats needs to be mashed, pureed, or very soft. I also develop things for her to eat. Like the rest of us, she gets bored eating the same thing all the time.
4. Transportation – Lauren needs a wheelchair accessible van to get around in. We live in the country so public transportation is not an option. We also pay for her gas, most of the vehicle maintenance, and her car insurance.
5. Household duties – I do Lauren’s laundry, purchase all of her clothing and personal care items, and clean her room and bath. Lauren can only wear something once before it needs to be washed and often has several clothing changes a day, this amounts to a lot of laundry. Staff are beginning to help with some of the laundry chores.
6. Medical – I make and take Lauren to all of her medical appointments, I administer her medications and supervise her medication needs. We pay for a medigap policy, and tolls and parking expenses related to medical appointments.
7. Financial – I am Lauren’s representative payee and manage her bank account
8. Clothing – Lauren pays for some of her clothing from her SS, but we pick up the rest of her clothing, diapers, and personal care products.
9. Service Management – I coordinate all of Lauren’s self-directed supports and oversee her health insurance and medical bills. I hire, fire, and train all staff. I do all of the paperwork that supports Lauren’s life. I develop her and her staff’s schedules and activities.
10. Social – I manage all of Lauren’s social life i.e. family activities, outings, and I’m always trying to find opportunities for Lauren to participate in her community and develop friendships.
I can’t even begin to figure out the “replacement” value of the natural supports in Lauren’s life. At a minimum she would need at least two more full-time caregivers and funding for housing, food, and transportation. Lauren’s number on the waiting list for waiver services in NJ is 1609. Without a serious commitment of funding from the state (and in the current economic climate, how, likely is that), she may not receive a sufficient level of support for, possibly, twenty years. Her father and I could never put away enough money to provide for all that she will need. We want to take care of our beautiful girl forever. It’s just not possible.
In reality, George and I represent the only two people in Lauren’s life who have always chosen to be there for her. And, that would have been the case even if we had another choice. Pretty much everyone else who is close to Lauren is a paid staff member. Her staff are wonderful, loving people, but they can, and have, just walked away. George and I are her guarantee that someone is there simply because they love her and care about her well-being and happiness. How do we replace that? Who will advocate for Lauren when we can’t? Lauren has no other family members who are involved in her life to a degree that they could take over our roles. And, I don’t foresee anyone stepping up to that task in the future.
So, how do I plan? I need options, ideas, and a promise that Lauren will have a future. The tools and answers I need to assure Lauren that her life will continue without me do not exist. If I don’t have those, what do I put on the list that will make up Lauren’s tomorrow?