Part Two: Is Family Consortium Right for You?
Marilyn: Welcome back to part two of our family consortium. I am Marilyn and this is my husband Joe. We are going to start with a video of what the house really looks like and I will narrate it as it goes on. We feel it is a good size house and what we went through to get it make everyone happy. This was winter time, which may be unique down here, but I think you get it anyhow. It was originally just a ranch style house that had been added on to. The right hand side is the garage. This used to be the garage and they made it a step down living room. We bought all the furniture for it and decorated it and cleaned it and painted it and so this is what it is.
Soon we’ll see a ramp. This is a ramp. The whole area back there was a dining room and to get a second bathroom in we had to make it handicapped accessible so this is the dining room now and this is an accessible bedroom. Each lady can decorate it the way they want and they have their own style and they keep it to their standards or not. This is her bedroom and everything’s so a wheelchair could fit in there. This is the kitchen that we cleaned up. There is the family’s microwave. We repainted it. This was the fourth bedroom which we turned into the second accessible bathroom. We were going to have six women there and we felt the small bathroom was just too small so we got a second bathroom in there.
This is our daughter Nancy’s bedroom. Again, we decorated it in her style that she likes. She is a fluff. This is the third girl’s room. She likes to buy a lot of stuff and this is her style and it is okay; she can keep it how she wants. And the fourth bedroom. She keeps it the way she wants and they all have their style and what they like to have and what they do. This was the only bathroom there when we moved in and we felt it was just too small for six women to be sharing. That is why we went to the second bathroom.
Looking back at the family room again. This is the basement, it is a finished basement and all the ladies brought in pictures of what they grew up with so it is kind of a history of them. That computer is my old printer 386 and so we gave it to their house. They like it. It has a wet bar, they do not use the wet bar of course. We bought them, you’ll see soon, a sewing machine and the staff will often do that. This was the grandmother’s office, or bedroom, has now become the staff office that they have so that they can keep their stuff. The patio, we made it accessible, we raised the patio and have a ramp in the back of the house so it does not stand out. A lot of trees in the back is the depth of the yard but as you can see is quite wide. I was trying to lean out in the snowy day to try to get enough so I could show you the width of it, so it is quite wide.
We have a two and a half car garage. We started out with the Honda and a minivan. Now it is a Honda and a Toyota. This is girl’s night out. The mothers, the daughters, and the staff went out to Chee Chee’s, when there used to be a Chee Chee’s. All the parents and all the daughters really like each other. We advocate for each other’s kids and we just, we get along well together.
That is Kristin. That isNancy’s staff. There’s Nancy. That is Kristin again putting puzzles together. They all seem to like to work puzzles. Then like I said all the girls have jobs, the ladies have jobs in the community. That isNancy again, and that is the end.
Joe: Okay, when you start a family consortium of course one of the things that is very important is how you are going to pay for everything? How much you have to pay is just as important as how much or what you’re going to use to pay it with? So the first thing we had to do on the financial side is to form a budget for Nancy and her needs in the house. We divided Nancy’s budget into four categories. There are costs to live needs, transportation, home service support staff for people who take care of her when she’s not at work, and the job coach behavioral specialist staff which is the person who takes care of Nancy when she’s at work. This is the first part of the cost to live category, category one, and each of these items that you see here is a line item in Nancy’s budget.
I have been doing this now for 15 years so I have a pretty good idea of what each of these items is going to cost as the years go on and what they are going to cost the next year based on the experience I’ve had in the past. You can see things that you might find in your own budget perhaps. Nancy works downtown Akron,full-time union scale with benefits and only has 30 minutes for lunch for instance. So she has to eat her lunch in the area where she works so she goes out and goes into a typical small restaurant in the area and eats her lunch out. She is a fluff so cosmetics and personal needs and trips to the beauty shop are part of her regiment as well. She has an appearance standard at work so she has to look nice and that helps her acceptance into the community as well.
A couple of items on this list that you might not ordinarily think of that we had to make sure we budgeted for, one was legal expenses because families with a person of disabilities will find out over time that there are many legal issues that you have to deal with, from school advocacy all the way to wills and trusts and letters of intent and all those kinds of things in between. So we budget for legal expense every year and we periodically review and update our documents within the legal framework.
We also budget it for behavior management consulting because Nancy’s disability is based on, to some degree, her impulse control, and that is a behavioral issue that we need to make sure that we manage at an ongoing basis. Sometimes we bring in people to help us train the direct care staff in behavior management and sometimes we use this money to pay for any damage that Nancy might do in the house if she’s engaged in inappropriate behaviors. We cannot ask the other families who are living there to pay for damage that Nancy might do. The real glue that holds the whole thing together though is miscellaneous because there are always things every year that I do not think of but I need some money to be able to pay for because I did not anticipate that. The dollar amount is always about the same but the content of miscellaneous varies from year to year.
This is the rest of the budget elements for the cost to live expense category for Nancy. You see a lot of things that you would perhaps budget for in your own budget. In Nancy’s case, some of these are really pretty important to the quality of her life. For instance, recreation including vacations. We want Nancy to go on vacation because Nancy earns vacation at her full-time job and so, like any other person, she needs a break from her job once in a while and that is a vacation. It is a little more difficult to schedule because we have to have direct care staff go with her, we have to take her car, and use the costs a little bit more, but it is something we like to have her do. She has been on a lot of interesting and fun vacations including Niagara Falls, Myrtle Beach, Virginia Beach, Santa Belle Island, Henry Ford museum in Greenfield Village, Dollywood, Gatlinburg, so she’s been to some good places. She has her own passport to go to Canada and Mexico. We stay away from Mexico right now for obvious reasons. In any case, she has a good time going on vacation.
Then there is housing or rent. Nancy of course lives in a house not owned by the families but is renting by her by the housing arm of our local county board of MRDD and she pays rent for the privilege of living there. Each of the ladies puts into the house groceries fund too so they buy groceries in common. They do not buy groceries as individuals but they do input what goes onto the grocery list and Nancy does that as well through us.
The second budget element is transportation. We have to have a formal transportation budget for Nancy because we are talking about a key element to the quality of her life and that is being able to go and come into the community both for work and rec-leisure. So we do that and what we have done over time is set aside under the depreciation line money each year to help pay for Nancy’s replacement car. Every five or six years we have saved enough money by doing that, that together with the trade in value of Nancy’s car, we can get her a new car and keep her transportation to a high quality level. People with disabilities are often barred from the community or their life is limited in the community because of transportation issues.
The third category is residential service staff. Those are the people that take care of Nancy directly in her home. Nancy has one to one staffing and her staff work is shift rather than a live in model so Nancy by herself pays for four direct care staff people as part of her residential service cost. We divide the cost into basic staff coverage cost which is the wages and benefits of the people and administrative and program support which are the dollars we pay to the provider for doing things like supervision, training and so forth, accounting, what have you.
The fourth category in her budget is adult service which is really her job coach behavior management specialist. While the cost elements are the same for the direct care staff in the house, the wage per hour rate for this person is higher because Nancy’s work earnings are at stake here and also Nancy’s dignity as she goes about doing her job in a very public way in downtown Akron.
These are the revenue sources that we use to pay for the budget that we created so once we know how big is big, they have to gather up the money from the places that are available with money, braid those funding streams together and use it to support Nancy’s budget. We do not designate a particular stream for a particular purpose other than for Medicaid IO Waiver which is a dedicated stream used to pay for direct care staff that take care of Nancy in the house. Social security takes care of the SSI money and Nancy utilizes a PASS and an IRWE social security work incentive in order to make what she makes and still remain eligible for other strings that are part of her budget. When people are eligible for SSI they are usually also eligible for food stamps and Nancy is no exception to that. Then of course there’s Nancy’s work earnings which is the second largest string after Medicaid waiver in helping pay for Nancy’s budget. Nancy’s in the bottom 10% of all those with cognitive disabilities including autism in the country but yet she’s in the top 10% of all people in earnings and contribution to her own budget. She contributes about 20% to her own six figure budget. Parent contributions are a source that varies from year to year and we try to have it be zero if we can. Not because we do not want to contribute to Nancy’s life, but because the budget cannot stand over time if it is based on what the family can contribute to her budget. And finally the founder of last resort is the county board of MRDD which has local tax levy money which is used to pay for cost to live type items and for adult service or direct service staffing.
On the other hand when we look at things that you may or may not want to retain or some things we certainly recommend if you are in a family consortium that you want to retain. Remember family consortium is about choice and so some of these choices you certainly want to retain if you are going to really have a family consortium and it is going to operate the way that it should. First of all, you want to be sure you retain choice service provider. We will talk about more in a later segment about how important that is and what are the qualities. You want to make sure that you retain within the consortium families the choice of what other families are going to join the consortium. And of course you want to retain the choice of which residents will live together in the home and that should be a mutual decision made by both the families and the residents who are already living in the home. You want to retain the opportunity to set the culture and how it is put into practice. Ours is live, work, and recreate in the community. If we did not retain control over that particular culture, it would be very easy to get away from that and we would have something that we do not want and have little control to keep going in the manner that we want to.
Marilyn: An example of that would be one person doesn’t work and sits at home watching TV all the time eating chips. Why would the other ones want to get up at 6 and go to work when someone else gets to save a lot of money if they just sat at home?
Joe: So it is very important that you set tone if you will, that you with your provider agree on what it is that you are seeking and that the provider themselves and their direct care staff employees go about putting into place the culture that you are seeking to have in your home. You want to control what extra spending will occur that the parents are going to fund. In part one we had talked about an example of when that did not occur on the part of the staff and the parents were kind of on the hook for a very expensive trip to Disney World in Florida because they were left out of the decision making process. We do not want that to happen again and we do not let that happen again. You cannot really afford for that to occur. When you are going about choosing the provider you want to think about certain things in particular and these are just some highlights about the provider selection process.
First of all you want to talk to many providers. You are going to get a feel about whether or not you can work with the provider by talking to different ones and see how they approach the subject of service delivery and whether that is compatible with your expectations. You want to know that provider is going to share your family philosophy. That is be able to put in place the culture that you are seeking in the operation of the home. We recommend you select a provider who’s CARF approved, CARF standing for the Commission for the Accreditation of Rehabilitation Facilities. It is kind of like an ISO 9000 organization in the business world but for social service agencies. They do get rated on their quality and their delivery against their procedures and has to be reviewed every one to three years and be recertified. So it does not absolutely guarantee that you’re going to get what you expect but it certainly improves the odds.
You want to look at the staff turnover rate that the provider has and look at that with the right kind of outlook. It is a high turnover industry and so when the average is 40% annual turnover, a provider with a 20% turnover rate per year is a good provider relative to the standard provider in the industry. You want a provider that is willing to partner with the parents. You are going to have things you do not know and have not thought of and have to work out solutions to and if you have a pragmatic partner who can work in concert with you, that is the kind of provider that you want.
You want a provider who has reasonable cost because if you cannot afford the provider it does not matter how good they are. Sooner or later you are not going to be able to use them anymore and that is not something you want to have to deal with. You want a provider who is flexible. The it is my way or the highway attitude on a part of the provider is not going to work in a family consortium situation where first of all you have up to four families who have needs and then four residents who have needs. They have to be able to dance with you as things change over time.