Few, if any, volunteers have the training or skills to provide Developmental Therapy. According to the Idaho Administrative Rules (IDAPA 16.04.11.10.14) “Developmental therapy is the use of therapeutic intervention and positive behavioral techniques that result in measurable skill acquisition or prevent regression …”
Most volunteers from the community have no training or education in “therapeutic intervention” or “positive behavioral techniques” and volunteers will not have professional supervision. Currently, developmental therapy (DT) requires supervision by a “developmental specialist” with specific qualifications and experience, on a weekly basis. Without this supervision and training the therapy is unlikely to have the desired outcomes. DT should never consist of merely taking a person to the store. It should include teaching the person how to behave in the store or managing tantrums or inappropriate behavior in the store. It may also include providing first aid for seizures in the event that one occurs. Injecting an untrained, unsupervised volunteer into some situations could be risky for the volunteer, the person with a disability or others.
PSR also requires trained and qualified professionals. PSR professionals go into the homes of people with severe and persistent mental illness (SPMI). They assess the person’s status and symptoms and evaluate their surroundings for health and safety concerns. They monitor and assist when necessary with getting people to their medical and mental health treatment appointments. They provide 24 hour on-call response to emergency situations and, when needed, they help people in crises to get to hospitals, emergency rooms or crisis centers. They also guide people through other personal crises which the person may find overwhelming such as evictions or family deaths. People with severe and persistent mental illness may or may not have complete medical control of their symptoms such as hallucinations or delusions, panic attacks or suicidal depression. The severity of these symptoms may wax or wane depending on their circumstances and the need for changes to medications. The proper supports for people with SPMI can be the difference between life and death as well as the difference between home and hospital. There are few volunteers who are capable of performing this work.
There is no current infrastructure to provide training, supervision, insurance and liability protection for volunteers to perform these tasks. The PSR worker is exposed to risks for themselves and for the people they serve. They need to be a part of a network that includes ready access to supervisors, clinicians and consultants. They need to be familiar and connected with other agencies and know how to efficiently access community resources for their clients. Someone needs to follow up and provide coverage when they are sick or unavailable. They need to be replaced when they stop volunteering. They need insurance protection from liability and injury. These things are not readily available from local churches or families.
A large contingent of qualified and willing volunteers will not spontaneously arise from the elimination of DD and PSR services. If we are confident that volunteer assistance could replace these services we should be willing to guarantee that a person’s services will continue until adequately trained volunteers are obtained to replace them, and that the services will be restored if the volunteers are no longer available.
There may be a few examples of people whose disabilities fall on the milder end of the spectrum who would get by for a while with volunteer services, if they could be found. However if services are eliminated or severely reduced we must also consider the people who have the most severe symptoms, or the highest levels of need for these supports. If volunteers cannot meet these needs, we must accept serious consequences and greater cost burdens shifted to other areas. Our expectations for families and volunteers to step up to meet these needs should be realistic. Historically, these services have never been provided by volunteers or family members to any significant degree. If we look to a period of time before Medicaid funding for these services, Idaho operated Adult and Child Development Centers (ACDC) with general funds and state employees. This program was privatized through Medicaid saving the state large sums of money. Before ACDCs people with intellectual disabilities were believed to be incapable of learning and were generally institutionalized in state funded facilities (In the 60’s ISSH had 1,100 residents) or kept in large shelter homes in poor conditions without training.
Medicaid’s scenario for eliminating these services applies to adults. Adults receiving these services may or may not have living family members. Just as baby boomers make up the largest group in the general population, they also make up the largest group of people with disabilities. Their parents are now either deceased or of advanced age. Few can offer any more support for their adult children than they already do. If these people have siblings, they may not live in the same area and they have primary responsibility for their own children and spouses. Families that can and will provide some support to people with disabilities are often already doing so, and are stretched to the limit. In these cases, they cannot make up for services lost by elimination of the programs.
Conclusion: Untrained and unsupervised volunteers will not have the skills, the support or the resources to replace Medicaid services. If volunteers can be found, they will need training, supervision, liability and insurance coverage. We should continue providing services for people with disabilities until the volunteer services are available and after they stop.