Ethan will never drive a car. Ever again.
Occasionally, you might hear a story of a person with Down syndrome with a drivers license. I am happy for them and their parents, but I feel that when a story like that is publicized, it sends a message to parents and the general population that is faulty. I know that it is meant to be encouraging, but the way I work it out, it’s like telling the parents of a typical newborn, “You know, I heard that some of these kids become US Olympians”. I did the math. Similar results. Even if it is possible for a tiny handful of people, it is not a practical probability for most. If you add in all the other folks with intellectual disabilities and adults with autism, you have a whole lot of people who need rides to get to their destinations.
Ethan recently began a Day Habilitation Program (this is not Ethan’s program – but it is a good explanation) that is located about 10 miles from home. It takes 20 minutes one way without traffic, but the road that leads there is constantly packed with commuters & shoppers. A more reasonable estimate is 35 minutes. 1 hour there and back. Twice a day and with 5 other people’s schedules to work around. Just saying.
I have searched diligently for options that would allow Ethan to get to this program independently.
I was informed at several ‘Adult Life’ seminars I attended last year that programs are or are going to be required to transport the people attending the programs. Programs have informed me, off the record, that either they can do this on a very limited basis (which makes sense) or they cannot do it all. This is a real case of he said/she said.
I called both Somerset County Transportation and Union County Transportation. SCT stated that there is a significant waiting list and that they will not cross county lines. During the writing of this, I discovered in their brochure that they can drive 5 miles over a county line. We are not within those parameters, but I find misinformation frustrating. Union County Paratransit System stated similar requirements and said the person who answer further questions is in infrequently.
I found this and I was very excited. They informed me that their ‘vendor’ quit and they did not actually provide the rides themselves. No go.
I have spoken with two private transportation companies. One of them was approved to provide transportation within the medicaid system. That is one of the biggest changes the new graduates of this year are facing. They are all supposed to be receiving ANY service they require from agencies or people who can bill for federal funds. There is a loophole, but not for long. One concern is partnering with an agency that does not go on to get certified or do it in a timely manner. One quoted me $47.00/day and the other $52.00. I have asked people who are using these services if they are happy and they have reported positively, except that the drivers are often late.
There is a way to hire a specific individual to drive. The pitfalls here are also numerous. It is difficult to find people who wish to work for one hour at 8:30 and one hour at 2:30. There is still confusion about this new system we are working within and I have been told that the rate for driving is $.74 a mile and only when the client in is the car. I know people making this work and people who could not get anyone to do this. Who could?
The system I am currently using – AccessLink – works as follows: There was a lengthy application process. If there is one thing that this new system delivers consistently, it is the extensive piles of paperwork. There was also an in-person interview and letters from doctors. Once we were approved, we were given all the information to make a reservation. My first call to AccessLink, I was on hold for 55 minutes. All of my calls since have been between 18 and 35 minutes. I need to make reservations 7 days in advance at the moment they open (7 a.m.) for any chance of success. I need to give the reservationist a 40-minute window within which they can pick Ethan up. This is a tall order for someone with intellectual impairments and on the spectrum of autism – “wait here, they might come here in 5 minutes or 40 minutes.” If you know Ethan that is difficult situation for both of us.
The reservations are given in odd windows of time. When I want an 8:30 pick up I am offered slots like 6:10 to 6:50. No. Too early. 9:05 to 9:45. Too late. Sometimes they offer me 8:10 to 8:50. Bingo! Another quirk of the service is that each ride (even the exact same route) can be a different fare. So far it is hard ranged from $3.05 to $6.40 one way. Cash. Even. No pennies. Change will not be made. This does not give a personal with an intellectual disability the opportunity to learn what the fare for their ongoing transportation will be, as it is always different.
So far, I have been able to book between 1 and 3 of the six rides a week required to get him back & forth to the program. Although I know that there is another individual leaving my town and going to the same program on a very regular basis, he cannot ride this bus. It is a ‘subscription’ slot and you need to ride a specific ride about 30 times before you can request…placement on their waiting list for that slot. At the rate of 1 to 3 rides a week, that’s going to take a while. But I have been told to persevere because although this seems difficult, it has the potential to be reliable and smoother in the future.
The ultimate problem is that our newly minted adults were dumped into a program that was neither ready for them nor filled with options that really work. It has been like piecing together a jigsaw puzzle with slightly ill-fitting pieces.
Good thing I’ve been doing that his entire life.
