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What if you are stuck on a never ending waitlist for residential services or there are not any quality residential providers available in your area?

You do have the option of asking disabilities provider who may not have much experience supporting people with autism, if you can bring in your own outside trainers to train the staff in techniques that help people with ASD continue to learn and grow.  The problem is that staff turnover is very frequent in the autism services field, since the hourly pay in many states is very low paying. So it is difficult to keep up with the training requirements, since hiring qualified trainers can be costly.

If there are no qualified service providers in your area, or if you are on a waitlist for adult services and it is clear that it will be a very long time before you will receive funding for residential  services, you have two options. You can decide to move your family to another state that does not have a waitlist and does have quality service providers/ vendors. Or you will have to make a concerted effort to connect with some local, like-minded families, and together the group will have to plan to develop your own housing options (cooperative or other models) and begin to try and leverage the efforts of your group, to   negotiate with your state developmental disability agency (and political representatives, if necessary) to move your group up the waitlist so the developmental disabilities agency will pay for the staff support, since you will be paying for the actual housing.

This is what we mean by public/private partnership.  If your state officials refuse to open discussions for negotiation, your group will need to seek assistance from your state political representatives. Remember to keep documentation of all dates for phone calls and written correspondence related to your efforts to discuss your group’s options or to negotiate with state agencies.  Documentation of your efforts will come in handy later, should you seek legal or political remedies. 

If more and more groups join together using this approach, we hope this will help create a national policy that allows people with autism who pay for their own housing through a special needs trust or other appropriate means to move up on the waitlist for state services. The cost to develop community housing tends to be a lower cost in the long run, compared to the cost of paying for ongoing staff support services. Most families cannot afford to fund staff support services over the lifespan, and it is mandatory that the state developmental agency agree to cover these costs.

Family Issues and Critical Events

It is ARCHway’s view that a “critical event” is the prevailing or most frequent context for the placement of a consumer with autism in a residential facility. The event may involve the consumer with autism engaging in some sort of behavior that is injurious to self or others or is otherwise inappropriate and draws the attention of governmental authorities (e.g., school, law enforcement, social services, etc.) It may also be an accident, sickness, failing health or other event such that it is no longer possible for the parent or primary caretaker to provide a home for the consumer with autism. It is less often the case that placement in a residential facility arises out of planned transition that is mutually beneficial to both the consumer and the parental caretaker. A corollary observation has been that most adults with autism continue to live in their parent’s homes until such a “critical event” occurs, and there arises the need to expedite the transition of the adult with autism to a residential setting.

ARCHway concurs with this observation. However, we question an associated interpretation of this situation that it is the choice or “preference” of parents of consumers with autism to keep them in the home. As noted earlier, there are numerous conditions and circumstances that are impediments to parental caretakers being able to consider or engage in such a planned transition. Likewise, a quick perusal of the popular literature shows that societal views are mixed about whether the placement of a disabled person outside the parental home is the “right” thing to do in the absence of the “critical event.” However, it is ARCHway’s view that there would be more parents examining and choosing the option of a residential placement well in advance of a “critical event” if there were programs available that were more tailored to the needs of consumers with autism.

Parents who have endeavored to find a residential program for their love-one, absent the “critical event” have had mixed results. There are placements that have succeeded. Other efforts are less successful. Perhaps because the facility has been designed for persons with mental retardation or similar diagnoses and is not sufficiently prepared or flexible enough to address the needs of a consumer with autism. When a placement fails, the consumer returns to the home setting or is moved to another facility in the hope that a better outcome will be achieved. In either case, the subsequent move is a source of further stress for the consumer with autism and the parental caretaker.

While it is one of ARCHway’s interests to improve the transition of persons to a residential program under a “critical event” scenario, our focus is more on developing and proposing an incremental, long-term planning approach for parents to use in addressing their child’s future. The center piece of this approach is the creation of a life plan which covers a broad range of matters and serves as a reference for persons who will be interacting with the consumer over the years. It is a critical document that is a source of information about the person with autism and details a comprehensive plan for the person’s future. The plan is revised routinely or as needed if the circumstances of the consumer, parental caretaker or designated guardian changes. The plan would include information on such things as legal and financial arrangements, medical needs and residential preferences. It would also provide details about the person such as food and entertainment preferences, personality, daily routines and description of functional skill levels. In brief, the life plan is the mechanism for helping parents of consumers with autism address the question of “what will happen to my child when I am gone?”

ARCHway believes that it is most helpful for parents of consumers with autism to have access to a life-planners or other appropriate means that can provide training and assistance in the step by step process of developing person-centered life plans.

If this type of planning is done, parents can formulate the circumstances and/or time table for an incremental transition from the home to an alternative residence with less stress and a higher likelihood of success than the more common, ad hoc process that accompanies the “crisis event.” Parents can share parts of their child’s life plan with potential residential service providers in order for them to gain insight into the consumer’s needs and behaviors and assess the fit with their facility and programs. Even the “crisis event” process can be somewhat mitigated if a life plan has been prepared. With a life plan to serve as guidance, all interested parties to the transition have important legal, financial, and personal information readily available as well as an expression of preferred residential setting.

Whether offered by a residential service provider or in the context of day programs or others, FAST believes that parents are more likely to undertake planned transitions from the home to residential program and such transitions are more likely to succeed if life planning services are offered to families of consumers with autism as part of ancillary family training. Such training should include recommendations and resources for families to use in finding experts life planning/mapping, in special needs law and financial planning.

And finally, FAST recognizes that after the consumer has made the transition to the residential setting, it is critical that parents stay, to the extent possible, engaged and connected to their offspring’s life. Parental visitation and opportunities for shared activities in the residence are important for the consumer, parents and facility staff. Staff can gain insight into the consumer from the parent and the interaction of the parent with their son or daughter helps anchor some of the familial dynamics from home in the new setting. Parents (either individually or part of Quality of Life Monitoring Committees or holding positions on boards) can see how their adult child is doing and make suggestions for improving their loved one’s experience in the residence.