Help Wanted

A few days ago, a young father walked into one of our main offices looking for services. His twelve-year-old son is autistic, has an intellectual disability, and is physically aggressive. He goes to school but they were looking for help in their home setting. They are having a difficult time helping him to  manage his anxiety and aggressive behaviors and they just need a break. They have had some help in their home but it has been ineffective. The staff that are sent to their home are different each time and therefore haven't been able to establish a strong, lasting relationship with their son. They only have help for short periods, not enough to be able to plan for anything more than a date with the grocery store. One of my friends who is one of these staffers says the parents are often waiting at the door with keys in hand, so they can get every minute of that needed respite from caring for their son or daughter.

When community members think of people with intellectual disabilities, they have an image in their heads of friendly, happy, talkative people, possibly with Down syndrome. That's the pictures they have been presented with in the media and movies. But there is a truth out there that most people are unaware of. Many people with developmental disabilities present challenges to our ability to support them successfully.  And many parents are not receiving the supports they need.

There are parents who get very little sleep because their child exhibits self-injurious behavior so they can't take their eyes off of her, ever. Self-injurious behavior (SIB) can involve banging their head against hard objects, scratching themselves, putting sharp objects inside themselves, biting themselves, hitting their ears so hard and so often that it looks like a cauliflower. There are unlimited ways a person can hurt themselves if they want. Each person is different and each one exhibits SIB for different reasons so it is hard to help them to stop.

There are parents who spend their day spoon-feeding, changing, lifting their adult son or daughter from wheelchair to chair or bed. There are parents who have no time to themselves because their son or daughter can't initiate activities themselves so they look to their parents to engage with them constantly. Many parents have had to stop working to be able to care for their adult son or daughter because day services are only part-time. There are parents who are being hurt by their adult son or daughter with intellectual disabilities because the individual is frustrated, has a mental illness diagnosis, and the parents don't have the knowledge of how to safely support him or her. There are parents who must keep an eye on their individual 24 hours a day because they engage in pica behavior - the compulsion to ingest inedible objects. This is a potentially life-threatening behavior as the items can either be poisonous or get stuck in the intestines. And many parents do this alone because statistically, families with individuals who have disabilities are likely to be divorced.

All this is happening with no new group home building in sight because it is too costly. The new initiative is to have the individuals live in their family homes and to provide the supports they need there. First of all, the supports aren't really there for the families. They might be able to get a couple hours of paraprofessional services - residential habilitation is what this is called - but only if they can say their need is urgent or an emergency. Additionally, this is going to lead to isolation for both the individual and their family, when we are supposed to be going for full community inclusion. Staying at home is going to hinder the individual's growth as they can't move out on their own as all the other adults in the community do.

I know not everyone in the community cares about this topic but I think we should be trying to do whatever we can as a society to make sure everyone has the ability to pursue their happiness, for whatever this means to that person. We are in a political climate right now where some think that we should all be responsible for ourselves and not expect help from anyone. Those people who think that way do not have full knowledge of how many people truly need help and for reasons that are not their fault.