Many years ago as I was starting the Northeast Independent Living Program, a friend of mine who is still very active active in the Disability Rights movement warned me against including Personal Care Assistance as a service because of the inherent medical model requirements. I struggled with his advice and did it anyway because I felt like the need was so great. Because of his warning, however, I purposely controlled its growth so that it didn't dwarf other programs for people who don't need PAS but still have disabilities. It wasn't easy but it worked and other programs grew that served people with psychiatric disabilities, Deaf and hard of hearing, cognitive, etc. In Massachusetts, if an ILC chooses to provide Personal Care Assistance they must employ/contract with a Registered Nurse and an Occupational Therapist to do evaluations of need and subsequent re-evaluations. It flies in the face of the non-medical model of an ILC, right? Well, yes and no. If done properly, administering this medical program serves a huge need and won't unduly influence the philosophy and practice of the Center. Some haven't fared as well and people with physical disabilities are, by and large, their primary disability group because the income from administering the program has dictated their staffing and outreach priorities. The basic philosophical tenet of cross disability has, essentially, fallen by the wayside.
Now the stakes are even higher; with the Money Follows the Person and the Duals Demonstration federal waivers, Medicaid, and the medical model that it represents, have reared their heads again as ILC's try to do the right thing to get people with disabilities out of nursing homes and assist in getting good quality healthcare from participating healthcare plans for their consumers who are receiving both Medicaid and Medicare. The demands on participating ILC's by state Medicaid agencies to play more of a "clinical role" and jump through endless hoops and never-ending paperwork that, frankly, hinders their ability to get the job done has begun to significantly challenge the IL philosophy more than ever.
We are at a crossroads as a movement and together we must get in front of this problem before we lose our souls to the medical model. It's hard because there's nothing diabolical about trying to get people with disabilities good services to live independently in the community outside of nursing homes and other institutions. But at what cost?