PHILOSOPHY

Holistic Approach

From its inception, Bittersweet Farms has been guided by a holistic approach to life. All aspects of life at Bittersweet are naturally woven together, and consciously respected for those interrelationships. The rewarding aspects of the program that help participants are also features that are comforting and meaningful for staff. There is a tolerance for a wide range of behaviors for all involved. If a staff member or a participant needs reminders or guidance, all work together to help that person understand and reach the community's standards.

Partnering

Partnering is what Bittersweet Farms is all about. Bittersweet's philosophy about working in partnership applies to those with autism as well as to fellow staff members. The concept helps staff focus on the task and less on the manner in which all services are delivered.

This collaborative work model is illustrated well at Bittersweet, where all projects around the farmstead are done in partnership. Staff members don't see themselves as the ones who are going to fix autism. Rather, they see themselves as the ones who are going to pave the way and remove barriers, so that those with autism can witness the positive value of social connections. This is the most important basic concept in Bittersweet Farms' orientation program.

POLITICAL CHANGES

Since the current political climate in the United States is focused on the individual, there is the possibility of increased funding from many different sources. A site or program that is trying to obtain unitary funding for a holistic philosophy, and treatment through a singular model, is having a very tough time.

Although the Bittersweet Farms model is a wonderful model for serving people with autism, it is a hard model to sell in this climate of the individualized planning process and self-determination.

Fifteen years ago, Ohio and most states were funding group homes. These were small community based residential facilities that addressed the comprehensive needs of all of their participants. Eventually, there wasn't enough money to fund new buildings or new facilities. States then put a hold on dollars for residential facilities. They chose instead, to put new dollars into individual community placements, such as rented homes or apartments that were not facility based.

Fifteen or more years ago, the Department of Mental Retardation and Developmental Disabilities was funding residential services in a number of ways. They would fund state-run developmental centers with 100 and more beds. Then, in a different section of a department, they would fund a wide network of ICFMRs (Intermediate Care Facility for the Mentally Retarded), the Medicaid approved, nursing home style, approach to congregate living. In addition, a community branch of the department worked in partnership with local county boards of Mental Retardation, to fund individuals living in the community. In a gradual process that has accelerated over the last five years, they have taken Medicaid dollars that would normally have been assigned to placing someone in the ICFMR, and waived the standards for institutional living. These Individual Options Waiver funds, available to a limited number of eligible consumers, then paid for services that could be found in the community.

The state expected that this would account for about 70% of the costs, and they could serve many more people. They hoped they could avoid building so many brick and mortar institutions, while enabling more people to stay in their home communities.

Today, there continues to be a freeze on the development of any new congregate living or institutional beds, so that new funds can be reserved for community placements with individualized service planning.

Unfortunately, as they made this shift, there was an inadequate amount of money set aside for new placements of any type, and families crying for residential support were added to waiting lists. Thus, as Bittersweet Farms was developing expertise in autism, it was gaining a waiting list that was very long, with no ability to build additional sites. In order to meet the growing needs of families of individuals with autism, Bittersweet Farms added a supported living component to its residential service options, funded by the Individual Options Waiver.

The individual option wavier pays for home and personal care expenses. It provides personnel who go into the home for needed supervision, behavioral supports, therapeutic interventions, and any other services that would enable a person with a disability to live in the community.

To help implement these plans, the state appoints a private or public agency. Such a non-profit organization or county agency brokers the needed services. There might be several agencies involved with the plan. One agency might help find homes and assure that rental property is available for that kind of placement. Another might provide the needed personnel, and another might design the service plan and oversee payment.

Now, a family can put their name on a waiting list for such services. When their name comes up, they get the equivalent of a voucher for all their needs. They then sit down and negotiate for all those services and select providers from the community.

The waiting lists are very long. There are thousands in Ohio with mental retardation and developmental disabilities who are waiting for placement. Ohio is working hard to maximize its services through the Medicaid program, but it hasn't been able to keep up with the demand. There are neither enough money nor enough providers at this time, to serve those on the lists.

The implications of that change are that Bittersweet Farms cannot expand its program, in spite of the growing needs of the population they serve. Bittersweet receives phone calls all the time, from parents of newly diagnosed children with autism, and from those whose children are outgrowing the provisions of their local school systems. When they inquire about residential services, they are told that Bittersweet has stopped adding to its waiting list. For lack of available funding, they have not been allowed to expand their number of beds in the on-site residence, and there has not been enough state money to increase supported living services, in spite of the fact that they have the expertise to help these families. This situation is frustrating for all involved, as families have poor remaining options.

In the absence of expansion of these specialized services, communities are pressured to keep open developmental centers and state institutions, which all agree, should not be the treatment of choice. It appears that there hasn't been very much financial investment and planning for the present and future needs of people with severe behavioral challenges related to mental retardation and autism.

There are not enough alternatives available, and Bittersweet's waiting list would continue to grow. It is now at one hundred and forty plus, and there hasn't been an opening in nine years.

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