59. Gather and Confer Ek Baar Phir 3

“Gather and Confer Ek Baar Phir: Autism NJ’s Transition Conference 2017, Impressions Part 3”

I saved the best for last because that’s how I roll. This one was a talk by Deborah Wehrlen of DTW Consulting, and Lisa Parles, of Parles Rekem, a law firm that represents special needs individuals and their families. This isn’t to say that the other sessions weren’t amazing, but sometimes we just gravitate to a topic, a certain style of speaking, and the vibes being put out.

The topic was “NJ’s Statewide Transition Plan (STP): What you should know about the STP’s Impact on Housing and Service Choice.” Parles is herself the mother of an adult who lives in community housing, so she walks the walk, and her highly informative talk was peppered with good resources, but also with the genuine experience and emotion that we as parents need to perceive in order to trust someone speaking on a topic that fills so many of us with apprehension for our children’s future. I don’t know how she did it, but she didn’t fall into the trap of meandering on about her own life, yet still managed to put her heartfelt self into every word. Truly one of the best public speakers I’ve had the pleasure of listening to.

In essence, the STP is part of the federal Affordable Care Act, and each state is required to create a plan in order to receive Medicaid funding for adult services. All states have been given extra time to come into full compliance with these rules, which is a good thing because the rules as originally laid out were well intentioned but difficult to justify in reality.

Now of course I couldn’t have been the only one in the audience wondering how all the chaos engendered by the current administration’s funding cuts will affect the STP, but since we have no concrete answers as yet, we can only meditate and breathe deeply and try not to fall apart from the ambivalence. I guess a hearty, bootstrappy attitude will come into play?* 😦 It seems like wilful thickheadedness for government to imagine that people with developmental disabilities can just be told to toughen up, and that that will excuse whatever serious repercussions may result. More than ever, it is important for disability families to band together and advocate strongly.

The STP addresses Home and Community Based Services (HCBS), which include day programs and residential services. According to the Ohio Department of Developmental Disabilities, the five primary characteristics required for HCBS settings are as follows:

1. The setting is integrated in and supports individual’s full access to the greater community. This includes opportunities to a) work in integrated settings b) engage in community life c) receive services in the community to the same degree of access as people not enrolled in waivers.

2. The setting is selected by the person from among non-disability specific settings.

3. The setting ensures individual’s right of privacy, dignity and respect, and freedom from coercion.

4. The setting optimizes, but does not regiment, individual initiative, autonomy and independence in making life choices.

5. The setting facilitates individual choice regarding services/supports and who provides them.

Parles delved into how the rules are meant to allow people to live and work in as integrated a setting as possible, and that past history of abuse and neglect, and shutting away of people with disabilities, were kept in mind in the shaping of the STP guidelines. However, determining the best placement is not a simple or universal process, so just because it works for one person doesn’t guarantee a successful outcome for everyone else. Everyone in the audience was nodding. In the effort to fix past mistakes, we don’t want to subject the next batch of people to new ones.

We were all given an article from “People and Families: Spring 2017” called “New Jersey’s Statewide Transition Plan: Finding CommUnity,” by Brenda Considine. It is a well written look at the unintended barriers created by the new law, and what needs to be addressed. One of the examples given is of Parles’ own son, who self-injures to the point of having required eye surgeries, and thus would not thrive in a smaller group home, and needs more people around to help him prevent further injury. So in his case, an institutional setting, seen as ‘too clinical’ by STP rules, would actually be better for him. Also included was the example of someone with pica, who may need close supervision in order not to fall seriously ill from, say, eating plastic.

The other issue that is brought up is the 25% density limit on community housing–this is intended to facilitate disabled individuals living as mainstream a life as possible, but it actually hinders attempts at more creative living and working arrangements, such as campuses, intentional communities, and farmsteads.

Finally, the state mandated density review would not even be performed until after the projects had been constructed and occupied. This puts a severe damper on willingness to try new HCBS arrangements, as no one wants to invest a ton of money on something that might, in the end, get denied. And further, it is the people with the highest needs and lowest family means who will suffer.

All these problems led to an amended version of the STP, which has greatly improved the various stipulations, and now we really just have to hope that the laws won’t get tossed aside every time we have an election. Disability rights cannot be treated so cavalierly.

I really loved the booklet we all got from the Supportive Housing Association of New Jersey (shanj.org), called “The Journey to Community Housing with Supports: A Road Map for Individuals and Their Families in New Jersey.” Everything you’ve ever wanted to ask about the different options available, and which organization does what for your child, plus how to apply for funding, is in that booklet. Do go to their website if you are interested in getting a copy. It’s an invaluable resource.

At the end of the session, I had a huge lump in my throat when Parles reminded us not to sugarcoat our family situation when the time comes for our kids to apply for HCBS. She said, “I think we forget that out there in the world, young people grow up and make exciting plans, and their parents plan for retirement. Meanwhile, our situations are not normal, even though we normalize them. Don’t ever minimize what your family is dealing with, or you won’t get the supports you need. There are parents who cannot even dream of attending conferences like this because the level of care their children need precludes them ever leaving the house for a whole day.” I had to go dry my eyes in the bathroom after I heard that. There, there was that hand held out, reminding us we are not alone, and that as much as we love our kids, the stress levels we are living with are not sustainable, and we should never feel ashamed for needing help, and no politician should ever dare to dismiss what our kids need to survive and thrive when they reach adulthood.

Thank you again, Autism New Jersey, for a brilliant conference, for all the advocacy work you do, and for the ways in which you remind all of us that we have solid companions on our journey.

Radha.

*Please refer to my previous essay “Because Bootstraps.” I have also previously touched on apprehensions for A’s future in “Fright Night.”

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