By, Renee Wood

Once in a while I have these eureka moments that turn my head in a different direction.  That’s what happened in a conversation with an individual who was explaining that community options for people with Developmental Disabilities (DD) just isn’t fiscally sustainable.

For those who might be unaware of what I mean when I speak of, “community options” this is a new direction to give people with DD, who are unable to work full-time, other options for community involvement.  Typically, these individuals are currently enrolled in Day Habilitation programs (day habs) or sheltered workshops where individuals go during the day.  These centers do have activities that individuals with DD can participate in, and many do make friends and socialize with others who have DD.  I personally have no problem with people hanging out with others like themselves, whether they are people in the black community, the LGBT community or the disabled community.  But it has to be VOLUNTARY and not the ONLY option available as it is now for people with DD.

I’ve been part of committees, workgroups and even have a presentation I created to help implement these changes for people with DD to have typical access and experiences in community as non-DD people do.  In fact, the last workgroup I went to had us list all the things typical people do when they are not working or sleeping and this revelation still didn’t hit me.   But for some reason when speaking with this person about the fact that I honestly have no problem with people with DD getting together and hanging out as long as it’s voluntary and they have opportunities to meet non-disabled people who are not “in charge” of them.  Then it hit me that typical people don’t “plan” 30 hours of activity outside the home when he said “What are they going to do stay in their residence”?  I said, “What’s the difference?  It’s still forced segregation, whether they’re in their residence with people with DD, or go to day habs with people with DD”.  Suddenly I said “I don’t go out of my house 30 hours a week”!  He said “You don’t”?!  I said “No!  And it would piss me off if someone said I had to go out 30 hours a week just because I’m not able to work full-time, and I need assistance eating and using the restroom”!  The latter is why the DD system forces people to congregate in large group settings during the day with others like themselves, so they can receive what I coined as “mass-care”.

Then I also realized I kept hearing this question of, “How are we going to fill these other 30 hours a week for those who can only work 5 hours in the community”?  I started to analyze my typical week; 1 day in Columbus = 10 hrs, grocery shopping including driving = 2.5 hours, 1 night dinner out = 3 hrs, errands = 1.5 hrs, and that’s really about it.  So that’s a total of 17 hours a week “in the community”.  But I feel like I’m always in community!  Being in community doesn’t start the moment I leave my home and end upon my return.  Being “in community” means being connected with others.  Someone, besides your family and those who are being paid, know that you exist, and would miss you if you were no longer there.  (I don’t know if anyone would miss me in a positive way, but they would certainly know I was no longer there.)

Also, why are we talking about “filling hours”?  Tell me how many non-disabled people go around saying “How am I going to fill my non-working hours this week”?  That’s insane!  One doesn’t “fill hours”, one “lives life”.  When people have freedom, opportunities and transportation, life just happens!

I have plenty of options that I could do now, and that I enjoy doing, like; Thursday Bible Study, Wednesday poetry, Sunday Mass, roll in the park, go to the mall, and have family and friends over.  I have the freedom, opportunity and transportation to do all of these, and I do all these occasionally, but if I “had to” do these every week at my age, I’d die!  People with DD need opportunities to make connections with non-disabled peers, not a regimented schedule of things to do just because they said they wanted to.  How many non-disabled people signed-up for a 3 year membership at a health club and went 4 times in those 3 years?  Connecting happens by chance, not by forcing someone to go somewhere because they said they would.

Although it is true that the more time people with DD spend out doing things in the general public, the more likely they are to connect with non-disabled people.  However, if staff are not specifically trained on how, or have the will to help them foster these connections, then a person with DD could be in the general public 30 hours a week and these connections are unlikely to occur.  For example, if staff just takes John to the ballgame every Friday night during the summer, and they sit there, watch the game, eat popcorn, but John never talked or interacted with anyone but staff, is he really in the community, or is he in a DD bubble plopped down at the ball game?  But, what if staff said, “Hey John see that guy over there, he has a Red Wings shirt on, you like the Red Wings.  Why not go ask him if he’s a Red Wings fan?  I’ll be right here watching you if you need me”.  I would argue it’s not so much the quantity of time spent in the general public (although it does have to be enough to make regular connections), but the quality of time spent out there.

Also an individual’s age, health conditions (not disability, but conditions such as heart conditions, diabetes, high blood pressure, medications, etc.) and temperament, that might affect their endurance to be out more than a couple hours at a time without returning home to rest.  If you subtract one’s disability from the equation, and just look at a typical person’s life, either your life, your friend’s lives, or your parent’s lives, did time spent outside the home, engaging in non-work activities change with age, health, or a person’s temperament?  My point is, we can’t expect a 65 year old who doesn’t work to spend 35 hours a week in non-work activities away from their home, unless they want too.  I would even say these older individuals or individuals with very poor health conditions shouldn’t be “required” to spend this much time at day hab, unless they truly want to.

In looking back on my own life, I can see that changes in activity occurred by natural circumstances, or my free uncoerced choice.  I hesitate to stipulate that this freedom to change and develop only happened because I was not mired in the DD system of care.  That’s why I say the idea of “filling 30 non-working hours a week with community activity is another systemic trap for people with DD” in that it’s just another way to control people so providers can make money.  The example I gave of John at a ballgame; it’s dangerous to the provider’s pocketbook to encourage John to make human connections other than them.  What if someone takes a genuine interest in John, learns to care for his needs, and wants to take John to ballgames as a friend?  Money will be lost to that provider.

In conclusion, my friend is correct, it would be fiscally unsustainable for each person with DD to be in the community 30 hours a week with their own paid attendant.  If one thinks that’s the goal of the new CMS Rules then they are truly missing the point.  It’s about being out from under the total control of a “provider system”.  To have the chance to be just a person in community, rather than the possession of a provider in an isolated and segregated environment that can foster coercion and control, either purposefully or by happenstance. When one develops a network of friends, natural supports, and those who care about them, not for the money but because of who they are in that person’s life, the more advocates they have to back them.  This is how individual freedom begins!

Part II 

How A Life Develops