SCARCITY OF SERVICES FOR PEOPLE WITH INTENSIVE NEEDS
Presented by Alice Shulman, Parent
My daughter Emma is 22. She lives at home. She has severe autism, intellectual disabilities and Obsessive Compulsive Disorder (OCD). She is the most wonderful and hardest part of my life. I’ll be 60 in a few months. Em gets faster and stronger while I get arthritis. I want you to know she is loved and loving. But you also need to understand what we face.
Em can be overwhelmed by the world and bewildered by its expectations. She uses her OCD and routines to feel secure. OCD rituals are not good coping tools. They get in the way of life. A seemingly trivial event can spiral into major aggression when she can’t access the behavior.
For example, Em is obsessed with beverages. Drinks must be finished or poured in the sink. Thursday Em threw out an empty milk box. Minutes later she realized she needed that carton to finish whatever remained. But she can’t eat out of the garbage, so I hid the carton. Denied access, she screamed, stamped her feet and jumped at her aide, Jada, and me.
Jada, marched Em to her room. I grabbed prescribed Xanax and ran to Em who was trying to bite, kick and scratch Jada. Em was angry, scared, aggressive and frightened that she could not control herself. We ran ABA programming over and over. Eventually Em calmed, then cried.
We can’t control her OCD. We can ease the anxiety by preparing Em to be in the community. She needs to see what the activity looks like, how she will get there, who she will be with and how long it will last.
I make visual schedules and social stories for her. For example, for seeing a new doctor. I go on YouTube to look for relevant videos such as getting x-rays or flu shots. I make a booklet, with the doctor’s photo with name and explanation of why she is going. Next a photo with explanation of where Em is leaving from and who she is going with; next a photo and explanation of how she’s getting there, with any bus/train changes; next a photo of the building where we are going; next a stock waiting-room photo; next, individual pages of vital sign examinations and a step-by-step break down of any medical procedures. The last page is a photo of her next destination and who will be with her.
This technique can have fantastic payoffs. Em breezes through blood draws despite a needle phobia. But if I omit a step, disaster ensues. One day I planned to take Em to a special needs religious service. But I forgot to include “Em is not going to classes today.” She expected to go in the subway, not walk past it. Her day changed without notice. Overwhelmed, she melted down on the sidewalk. She lashed out, crying and shrieking as if defending herself.
We were two caregivers, thank God. No staffer could have coped with 3 other individuals. How could she have kept them all safe?
Em is labor-intensive. There are few programs, job sites or classes that would accept her without the support of one-to-one staff—something few programs have. I know because we’ve been turned away from programs, job sites and classes. We do Self-Direction, which bypasses traditional programs. Instead, Em has a supervised budget to hire staff and to create activities. This seems to be the only way we can create the staffing ratio she needs.
Although we have wonderful support team, Self-Direction is a bottomless pit of complicated, exhaustive paperwork that can’t help you if an aide is ill, or more importantly, when I can’t care for her. As good a team as we have, our situation is not sustainable. Someday our beloved child has to leave home. My husband and I cry when we say this out loud. We are terrified that there will be nothing out there for Em when we are infirm and she has to depend on the kindness of strangers.
I urge our legislators: make your political legacy be that you created more residential and day programs for people with disabilities, especially those needing intensive staffing. Don’t let your tenure be known for abandoning them.