A Non-Traditional Alternative
Introduction: It is difficult to believe that a father with a 28-year record of active advocacy for the choice of facility-based care and adamant objection to community placement for his daughter with profound/severe intellectual disabilities would voluntarily remove his daughter from a facility where he was president of the parents’ association and place her in a community home. Yet the former chair of VOR’s State Coordinator Committee and principal author of the VOR manual detailing how to effectively challenge forced community placement has in fact done just that. Read on to see why.
By Bill Haas
Our experience is typical of many VOR members. Bridget was born in 1964 cerebral palsied as a result of first trimester rubella. She functions at 18 months intellectual and is non-verbal. She can walk short distances with the aid of arm crutches. Bridget lived at home with us and her two older sisters until she was 13, when it became painfully obvious that we needed external assistance far beyond what special education could provide. Our case worker referred us to several community homes, and we were appalled by what we saw, heard, and frequently smelled. Only with political intervention were we able to place her in an Illinois state facility where she resided for 12+ years. When we were transferred to Alabama, Bridget moved to an Alabama state facility where she resided for the next 15 years.
While facility-based care is not perfect (no setting is), it is far more capable of caring for the multiply involved profound/severe than are the typical three-person homes that we have seen over the years. In those homes, rapid turnover of minimum wage direct care staff and make-work day care programs are the norm. In defense of the community providers, they are probably doing the best that they can given the required managerial oversight, necessary administrative record keeping, and the limited funds available. Were Bridget verbal and functioning in the moderate range, a three-person community home might be a viable alternative. But, the 5% of the retarded population—the profound/severe multiply involved—require a degree of protective oversight and a breadth, depth, and intensity of care that, in my opinion, cannot be delivered in a traditional three-person community home.
For 27 years we were quite satisfied with Bridget’s care in both the Illinois and Alabama facilities. She was safe, clean, medically cared for, reasonably well fed, and participating in a training program into which we had input. Further, we could have her home for visits at any time of our choosing. Then, in 2004, two things caused us to question whether Bridget should continue to be cared for in an institution.
First, Alabama had just closed four of its five facilties, and the remaining one where Bridget resided was being downsized at the rate of three or four clients per quarter. While no resident whose parents objected had been sent to a community home, I could see a strategy unfolding. While direct care staff decreases in proportion to client reduction, overhead costs do not. Hence, as population decreases, cost per client increases. A powerful argument for closure to state legislators is “It is costing us X dollars per client in the facility, and we can deliver the same care in the community for ½ X dollars.” Yes, the figures are bogus when quality of care and Medicaid billing for medical services are factored into the equation, but the cost of services argument in Alabama was winning over policymakers. As a result of our analysis, we started wondering if we had best find a more permanent acceptable placement before we were forced into a placement not of our choosing.
Second, and at about the same time, I was one of Alabama’s delegates to a national Quality of Life initiative. One of our sessions evaluated individual happiness and self-satisfaction.
While we were very pleased with the institution because our concerns for Bridget’s physical well being were met, we did wonder if Bridget might enjoy having a place of her own with more opportunity to control her surroundings.
These considerations – especially a desire to find a permanent alternative to the facility that would permit us to direct and control Bridget’s care – brought to mind a short movie—Joshua’s Home—that Tamie had shown us at the 1999 annual meeting held in Philadelphia. Jackie Golden had moved her son, Joshua, from the facility where he had lived to a house near her residence. Joshua was the sole resident of the house but was cared for by a staff that Jackie hired. I investigated and found that Jackie had elected to provide care for Joshua under a Medicaid approved program called a Microboard. While traditional community boards manage the care of a large number of clients, a Microboard exists to serve only one client.
The more I learned about the Microboard concept, the more intrigued and excited I became. While it is a waivered community home just like the traditional three-person community home, its charter is more directive and more limited in scope. It must serve one and only one client, and it must incorporate with a board of at least five directors, one of whom must be the parent, blood relative, or legal guardian of the client being served. The voting majority of the board, however, must not be related to the client or employed by the client’s parents or legal guardian.
Like all community homes, the Microboard is paid with Medicaid dollars for providing the services directed and approved by the oversight agency—normally the state Department of Mental Health. Further, like all community homes, the Microboard must adhere to the regulations and policies of the oversight agency. The most exciting aspect of the concept to me was that the “how, where, and in what manner” I delivered the services to Bridget would (with board’s concurrence) be entirely at my discretion.
Prior to requesting Microboard status, it was essential that we ensure continuation of the Microboard and of Bridget’s care in her home after our deaths or inability to manage the project. We were fortunate in having a daughter and grandson who readily committed to assume responsibility when we become unable to do so. It isn’t necessary that anybody considering Microboard status have a family member who will commit to assuming responsibility, but it is necessary to find a caring person who will commit to doing so.
In November of 2004, I requested Microboard status for Bridget. My request was approved in December, and we became Alabama’s sole Microboard. What followed was six months of preparation—incorporating, recruiting board members, finding and outfitting a house, designing forms for recording activities, and having Bridget make several visits to the home.
Bridget moved into HER home on June 1, 2005. Nearly five years later, she is a much different person. She smiles more, is more social with other people, and is decidedly more in control of her life and leisure activities. In her home, she moves about the premises, the deck, and the yard (under watchful supervision) as she chooses. At the same time, her safety, health, and essential services are in place and functional. We are pleased beyond our expectations.
At this point, anyone interested in evaluating the Microboard alternative probably has several questions—board composition, sufficiency of funds, continuity of services, staffing, etc. I will address those concerns and questions in a series of titled paragraphs.
How much money does a Microboard receive, and is it sufficient?
If the parent/legal guardian and the board members perform the administrative duties without remuneration, available funds are quite sufficient. Other alternatives will be discussed in a later paragraph. There are two sources of funds—Medicaid and Social Security. The Microboard contract will specify what client-specific services must be delivered and how much Medicaid will reimburse the Microboard for delivering those services. Medicaid funds are used to pay for client services and Microboard administration, and they may not be used to pay for the client’s room and board; the client’s social security must pay for room, board, and personal items. Essentially the home is the Microboard’s headquarters, so the client’s share of the occupancy expense need only cover an acceptable portion of that expense.
What type of corporate structure should the Microboard select?
It can incorporate as a standard C, as an LLC, or as a not-for-profit. If it incorporates as a not-for-profit, it still must pay taxes as if it were a standard C. The IRS will not grant 501(c)(3) status to a Microboard because its services are not available to the public at large.
What type of people should be on the board?
An ideal board would be composed of professionals whose services are needed and who are willing to donate their services. For a five-member board, that composition might be: the parent/guardian, an attorney, an accountant, a nurse, and a special education teacher. Should the parent/guardian be an attorney, accountant, a nurse, or a special education teacher, a nutritionist or a home economist would be a valuable addition. If the parent/guardian functions as the board president and team leader, the time required from the professionals is not burdensome. A board composed as suggested would result in the Microboard having very minimal administrative expense.
If one or more of the suggested professional persons cannot be found to serve on the board, and alternative is for the Microboard to forge a cooperative arrangement with a larger community provider who has those professionals on staff. Why are those talents needed? The attorney and accountant skills are probably obvious. The rules regarding administration of medications by direct care staff are quite restrictive, and the ability to contact an RN or LPN for procedural approvals is necessary. A special education teacher, a social worker, or a similarly trained professional must be available to write the client’s habilitation plan. Should the microboard be unable to procure the voluntary services of such a person, the assigned case worker can usually write the plan.
What type of home should the Microboard have?
That depends on the client. Even so, it is best not to be wed to only one particular type during the search phase. Because Bridget is crippled, we initially limited ourselves to considering only one story ranch homes. What we finally selected was a tri-level. Its location and the price trumped the one-levels that we had seen. Fitting the home with lifts posed no problem. The Microboard is not restricted to any specific contractual arrangement. It can own, lease, or rent. An ideal situation might be leasing a furnished home owned by a board member.
How should the Microboard staff the home?
Zoning regulations and the necessity to cover room and board with client Social Security funds virtually force the traditional community provider into homes occupied by three clients and staffed by non-residential minimum wage hourly employees. Because a Microboard has only one client, it has greater flexibility in staffing hire and in staff duty assignments. While each client will have unique staffing needs, we have found that for Bridget three staff members, all of whom can be classified and paid as professionals, works well. Two of the staff members reside in the home and alternate weeks being on duty nights and weekends. The third staff member, who is Bridget’s principal trainer, is on duty weekdays.
Where can a Microboard find staff?
A staff of the caliber I described for Bridget’s home is best composed of mature adults who seek long-term employment. While graduate social or nursing students are excellent prospects for one or two year residential staff, a more permanent residential staff can be found in the senior single population. The value of being in residence to such a prospective employee is a major drawing card. Retired or displaced facility employees are also a potential source. Regardless of the source or the urgency to fill a position, a thorough background check and at least two in-depth interviews are essential. A staff hiring mistake for a Microboard is an error with disproportionate consequences.
What about medical and dental services?
Those services are in-house or under contract in institutions. Community providers, to include Microboards, must locate such services. Medical services are covered by Medicare, but dental services are not. If there is a teaching hospital or university nearby, they will probably offer both Medicare covered medical care and very affordable dental care. In most cases, the doctor and dentist will be interns supervised by a senior doctor. Initially we were skeptical of these services, but we have found them to be highly satisfactory.
Does a Microboard need start-up funds?
Yes. Remuneration for services provided by community providers is paid after the fact. While payment lag varies by state, as a general rule, payment for services provided in month one will not be received until the 3rd week of month two. That delay necessitates start-up funds of at least two months operating expenses. There are also pre-occupancy home expenses including bringing the home into compliance with community home standards, furniture, appliances, utility deposits, and insurance premiums. Unless the state will advance the funds (unlikely) or the parent or a board member has available funds to loan to the corporation, a bank loan will be necessary. The parent or one or more of the board members will likely have to personally guarantee the loan.
What insurance should the Microboard carry?
In addition to homeowners’ or renters’ insurance, the Microboard must protect its board members and itself. Thus, board liability and general liability policies are essential and probably mandated by the state. A package policy covering the home, board liability, and general liability for a home located in other than a hazardous area should run about $3,000. If the staff will be transporting the client to activities, the general liability policy must cover the corporation for that liability.
A group solution to potentially difficult requirements
Some parents who might want to consider Microboard status for their child might not be able to marshal all the volunteer talent (nurse, accountant, nutritionist, attorney, administrator, special education teacher, etc) that I have indicated are needed. The inability to attract all that volunteer talent need not be a deterrent. If several Microboards enter into a cooperative venture, there are endless possibilities. If necessary, they could go together and hire all the required professional services. One nurse, for example, could easily serve several Microboards. With several Microboards operating in a cooperative venture, the cost of hiring professional services for the group would not financially burden any given Microboard. Another advantage of a cooperative venture is the sharing of staff. The type of arrangement that I am suggesting is already fully functional in Tennessee. There are approximately 40 Microboards in Tennessee. They have hired an executive director and staff who function to help Microboards get established and serve as a source of information and assistance to all the Microboards in the state.
Microboards give us one more care option. While not for everyone, it is certainly an option that should be considered for the profound/severe who are multiply involved. Where facillity care is not an option, Microboard status may well be the only viable option. Should anyone have additional questions, contact Tamie. She can put you in contact with me, and I will be more than happy to answer as many questions as you might have and would be pleased to work with you in forming a Microboard should you elect to pursue that option.
In closing, I apologize to any reader who might be offended by my use of the “R” word and my failure to use the euphemistic People First language. I find that using benign sounding words for unpleasant or tragic conditions masks the seriousness of the condition to the uninformed public and as such results in their not appreciating the degree of care and assistance required.
William E. Haas