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Anyone who has read my blog knows that we have been struggling with obtaining appropriate services for my son, for many years now.

While he was in High School he qualified for funding to provide him with support services that would help him become more independent within the community. The first service we obtained was “Habilitation” services, a “Home and Community Based Service.” He would have an aide to take him into the community to help him work on social skills, community integration and independent living skills (handling money, making purchases, riding public transportation independently, etc.).

We chose an agency in the community to provide this staff person… the first person they sent was a college student who couldn’t even get out of bed the first day they were scheduled to work together. There were two more that followed her before we decided to try another agency.

The second agency provided us with two different aides, the first one couldn’t do without a cigarette long enough to catch a bus on time, the second ignored my son while talking on her cell phone rather than working with him.

We tried providing our own habilitation aide, hiring friends of the family. We went through two such individuals, the first worked 3 of the first 8 scheduled days, calling off, having her daughter call her off or just not calling to tell us she wasn’t bothering to come. The second didn’t follow directions, did things that put my son in dangerous/uncomfortable situations.

In the mean time we’d also added Supported Employment services. The first Rehabilitation Assistant couldn’t arrive on time to save her life, but demanded that he be ready whenever she did arrive. She had him detailing her car for her, which her supervisor had told me was inappropriate. She admitted to the county agency that manages our funding that she didn’t know she was supposed to find him a job, accompany him on the job and help him learn the work required, she thought she was supposed to teach him skills first so he was ‘trained’ before finding a job.

We were assigned another rehabilitation assistant to work on supported employment, by the same agency that supplied the individual I just mentioned. Things started out relatively well. We asked if this person could also act as his habilitation aide. For more than a year she functioned in both capacities.

As time went by we encountered more and more problems. She had issues with punctuality; issues with being where she was supposed to meet him before he arrived so he would see her and know where he needed to be; she had issues with availability to him – when he needed to contact her she didn’t answer her phone; she came to the house in tears from personal issues; she told him to be honest with her but when he was she would cry, tell him he’d hurt her feelings or cop an attitude with him; she professed to be a procrastinator which seems to have impacted her ability to schedule observations/assessments with employers, complete necessary paperwork, etc.

He finally told me he didn’t trust her, felt uncomfortable about going out with her. We spoke to the supervisor and had another staff person assigned to him.

This change brought more stress. The staff person said she could most easily be reached through email, but it took days for her to reply to emails. She told us she couldn’t find his ‘clearances’, they would need to be renewed, when I told her they should be in his file she told me she was told they were “way-out-of-date” even if she were able to locate them. She said he had to have another TB test and have a drug test, just to complete employment assessments. She scheduled assessments that he’d already done, at locations he’d already explored. She indicated those employers were requiring the clearances, TB test and drug test before they could complete assessments there, but those things were not required when he had completed assessments at those locations in the past. She wanted to assess him doing tasks he was uncomfortable with and had experienced a great deal of stress about doing.

We discussed not starting assessments until January since they were just getting to know each other the four weeks before Christmas and she was going to be unavailable the week of Christmas, yet without any further communication, she scheduled an assessment for Dec. 18. Because she didn’t speak to me first, she didn’t know his habilitation services were scheduled for that day that week and he wasn’t available to go with her on that day.

I asked her why he had to go back to those same locations and be assessed at the same tasks he’d already done and she said it wouldn’t be professional of her not to see it for herself. I beg to differ… that’s what CASE NOTES are for! That’s what the Individualized Service Plan (ISP) is for, to get a snapshot of that individual, what they are interested in, what they have done, what they are working on.

I’ve hired my own habilitation aide for him who started the beginning of December and this is, by far, the happiest and least stressed he’s been in years! He leaves laughing and comes home laughing. He’s excited to go with her and wants more time with her. She totally ‘gets it’, his needs, what he’s comfortable with and what we’re trying to accomplish.

What does it say when so-called ‘professionals’, with college degrees can’t provide a service in a way that acknowledges and respects the needs of the individual, but a lay person with no training in this field can step right in and make a difference?

Thursday afternoon the latest Rehabilitation Assistant returned my son home after volunteering and like the two previous times, she didn’t intend to speak to me about their experience. I happened to be sitting outside with my dog in the back yard where she had to pass by me. I tried to ask her some questions about the things I was concerned about, the changes in the requirements for him to complete assessments and her response to me was “I don’t have time to talk to you now, I know that’s not what you want to hear, but I have another client I have to see.”

As far as I was concerned, that was IT! Complete dismissal of my son’s previous experiences, his stressors, the need for communication and the fact that the waiver funding his services is “PERSON and FAMILY DIRECTED”. We are to have input, direct services he receives and how they are received.

I spoke to a Mentor that specializes in the MR system and waiver services in our state and as a result spoke to the county agency that manages our funding. The result was a consensus that this agency doesn’t have enough employment contacts within the community to sufficiently meet the needs of an individual like my son (who has a social anxiety disorder) and as a result are trying to force him into situations where he’s uncomfortable and unable to work rather than pursuing a wider variety of employment contacts.

They have, twice now, asked me and my son to tell them where/who they should contact for possible employment opportunities for him. The consensus in regard to that is that it’s not my job, I’m not trained, I don’t have the tools available to me to make such a determination. This agency boasts that their staff are professionals, all holding Bachelor’s degrees and they are the highest paid agency in this area and think they should be paid an even higher rate of pay… it IS their job to develop community contacts.

We have actually discussed this numerous times and his ‘likes’ and ‘dislikes’, what ‘makes sense’ for him and what ‘doesn’t make sense’ for him are all outlined in his ISP.

We ended this service Friday. My son said it was such a relief. He wants to expand his time with his habilitation aide and is so glad he doesn’t have to deal with all that other nonsense. I have to say that I feel an overwhelming sense of relief myself.

I am investigating another option for him to continue volunteering, so he can work on social skills, develop some friendships and can experience some successes.