Disability Policy Conference: What I Learned

One of the cool things about working for my local Down syndrome organization is that sometimes I get the chance to attend some really interesting conferences that I might not otherwise be able to. Earlier this week, I had the opportunity to attend the 9th Annual Developmental Disabilities Public Policy Conference in Sacramento, hosted by the Arc and UCP California. (The Arc, in case you didn’t know, stands for the Association for Retarded Citizens. Obviously, they no longer use that name, but since they’ve been around since 1974 and were heavily branded and know as the Arc, they kept the acronym. UCP stands for United Cerebral Palsy and was founded in 1949.)

I was excited to go to this conference for a couple of reasons. First, the past four years have brought me a lot of knowledge about Down syndrome specifically, but I was interested to expand my knowledge into other more expansive issues of disability. Second, in the past year I’ve become the legislative advocate for our DS org, and it has been fun but a steep learning curve. I have always shied away from issues of politics because I get irritated by all the mudslinging and corruption that tinges them. So I felt like a conference on public policy would give me a useful foundation for the work I’m doing as a legislative advocate.

As it turns out, I almost didn’t end up going. I was sick over the weekend—fever, chills, aches, sore throat, the whole nine yards. On Satuday night I still had the fever and felt awful, and I was scheduled to leave at 6am Sunday morning! So I set my alarm for 6am and decided I’d make a game-time decision. I ended up feeling somewhat better (and fever-free!) on Sunday morning, so off I went.

I learned a lot at the conference, and I share it here partly to cement it in my mind (and so I can come back here as a reference) and partly because I think some of my readers might be interested in the issues we covered. I won’t give you a detailed analysis of everything, but rather an overview of some of the issues that really struck me as key.

  • It’s all about Lanterman! I hear about Lanterman a lot—the Lanterman Act, the Lanterman Coalition, Lanterman refunding… Lanterman, Lanterman, Lanterman! And I had a general idea of what the Lanterman Act was, but not specific knowledge. Now I feel as if I understand a whole lot more. In short, the Lanterman Act, passed in 1977, gave people with developmental disabilities the right to services and support that would allow them to live more independent lives. There are, of course, a lot of pieces to this act, but that’s the general idea. The Lanterman Coalition is a group of organizations, including the Arc, UCP, the Autism Society, Disability Rights California, and numerous others, that have been working together to preserve the Lanterman Act. For example, services for the developmentally disabled in California have been slashed drastically in the past, and lately the Coalition has been working to restore funding. By steadfastly remaining a strong, united group, the Coalition scored a major victory this year in terms of restoration of funding, including significant increases in funding for direct care staff wages, Regional Center operations and administrative costs, supported and independent living, supported employment, respite, and transportation. In a time where funding cuts are the norm, this was an incredibly exciting victory!
  • HCBS settings rule. This stands for home- and community-based services, and it’s a part of Medicare/Medicaid. Basically, the disability community is continuing the move away from institutional settings and into home- and community-based settings, given that pretty much all evidence shows that people have more successful, comfortable, happy lives when they are not in an institutional setting. So, to receiving Medicaid reimbursement from the federal government, states must follow the HCBS settings rule to ensure that services are delivered to individuals in home- and community-based settings that meet the guidelines set forth in the settings rule. A challenge is in getting the person with the disability’s voice heard when it comes to the plan for his or her treatment and care.Advocates are working to achieve more person-centered planning, where the person in question is an active participate in planning the details of care and treatment—even if that person is traditionally nonverbal. One mantra I heard was “Nothing about me without me”—in other words, people surrounding the person with the disability shouldn’t be solely in charge of making decisions; the person with the disability needs to be a strong voice in the process.
  • CCS transition to managed care. CCS, which stands for California Children’s Services, was established in the 1920s and provides services to medically fragile children in California. Right now, there is a move to wrap CCS services into Medi-Cal managed care. The concern about this is that the children receiving services through CCS may find a decreased level of care if that happens. They may be forced to switch providers and may not be able to continue receiving the same level of care from specialists that they had previously been receiving. So, advocates are working to keep funding separate from Medi-Cal managed care and to try to ensure that children under the plan see no disruption/change to their services—or at least, as little as possible.
  • State of the budget. Okay, I admit that I expected this to be the dull part of the conference. And I admit that I was wrong—it was actually fascinating. I wish I had a written down the exact numbers to be able to share with you, but I will have to give you estimates. The part that struck me is the amount that the state spends on various individuals. Basically, the state spends roughly $10,000/year to educate a student in a mainstream K-12 public classroom. That number more than doubles when you’re talking about educating a child in special education: to roughly $22,000/year. But perhaps most interestingly, the state spends roughly $70,000/year to house each person in a state prison. Wow. It is perhaps an oversimplification, but here’s how my mind looks at this: In California, one in five children lives below the federal poverty level. Many people in the prison system turn to crime because they have grown up in poverty and/or unfortunate circumstances and know no other way. What if we took some of that money we’re spending on prisoners and worked on helping children who are growing up in these situations? Would the long-term result be that we’d have fewer people entering the prison system? Hmmm, something to think about…And from a personal standpoint, the numbers on mainstream vs. special ed fascinated me. As you probably know, we had to take legal action to get Sam to be allowed in a mainstream preschool program rather than in special ed. Sam is in private preschool because there is no mainstream preschool program offered through the public school system here. And even at private-school rates, Sam’s education is costing $11,400/year—not much more than the state pays annually for a K-12 student in the public school. And far less than the $22,000 they’d pay for him in the special ed program they wanted him in. So I guess this was a win-win: By insisting that Sam be put in a mainstream school, we did the best thing for him—he is absolutely thriving and making steady progress; I am confident he will be fully prepared to enter mainstream kindergarten. So it’s a win for Sam, but it’s also a win for the state—they’re paying less money to have him in mainstream than they would’ve if he had been put in special ed.
  • Farewell to developmental centers! This is an exciting development (pun intended)! California is working to close its remaining developmental centers. Developmental centers is a nice word for “institutions”—they are the facilities where adults with developmental disabilities used to be placed. I suppose in anything there is good and bad, but the general consensus is that these facilities were not good for people with developmental disabilities. There have certainly been many, many claims of abuse and neglect, and even where that hasn’t existed, the residents were completely segregated from society, which has been shown to be incredibly detrimental to their quality of life and their development. There are a few remaining developmental centers in California, but they are on the way out. It’s a slow process because every resident in those centers needs to have someplace to go—a new residence with all the appropriate supports in place.We also got to hear a very inspiring speech from Senator Jim Beall about housing for adults with developmental disabilities who are being relocated from developmental centers (as well as adults with DD who are simply reaching the age of needing housing but were not ever housed in a developmental center). Which brings me to my next point…
  • Housing for everyone! This was pretty interesting to me. Sam is so young that it’s not something I spend a lot of time thinking about (yet), but Chris and I have certainly discussed it: Where will he live when he is an adult? Obviously, this is going to be Sam’s choice—will he want to live with us or will he want to live independently? He certainly can live independently, as long as we ensure the proper supports are in place. And there are some neat programs in place to ensure housing opportunities for adults with disabilities—whether their choice be an independent living situation or a small group home. There’s even a program in place that allows a family to donate their home to a nonprofit housing organization so that their loved one with a DD can continue to live in the home when the parents are no longer able, and doing so will not negatively impact the services the person with a disability receives from the state. (Leaving money or items of significant value to people with disabilities can create a huge problem with the necessary supports they receive from the state.)
  • Self-determination! In the spirit of “nothing about me without me” comes the Self-Determination Program, which Governor Brown singed into law in October 2013. This program has not yet been funded (long story), but hopefully it will happen in the near future. What it does is allow Regional Center clients (such as Sam and anyone who qualifies for their services) to determine how their allotted dollars are spent. Right now, the Regional Center tells us what therapies they will allow for Sam. Before he turned three, it was an infant development specialist, physical therapy, and eventually speech therapy. But under self-determination, Sam himself (when he’s hold enough—and we when we’re still his legal guardians) can say what services he wants his Regional Center benefits to cover. This would’ve been awesome to have, because honestly, I probably would’ve opted for increased speech therapy and occupational therapy over physical therapy. Sam has always been very strong in gross-motor skills, so while I appreciated PT and certainly took advantage of it, if I’d had the choice, I would’ve focused on areas where he needed more help. Hopefully, self-determination will become funded and offered, because I would love to start getting Sam more speech therapy and some occupational therapy! The Self-Determination Program has actually been piloted in a few Regional Centers in California, and it currently has a 100 percent satisfaction rate. Wow!
  • Competitive Integrated Employment. Right now, many people with developmental disabilities find work in sheltered workshops, where they receive pay below the minimum wage and are in a segregated environment. There is a big push to change that model to one of competitive integrated employment—where they are working in jobs alongside a wide variety of people, both those with disabilities and those without, and where they are earning at least minimum wage. Experience has shown that the younger we start introducing people with developmental disabilities into these types of employment situations, the more successful they are at remaining in these types of jobs throughout their life. So, advocates are working on programs to start getting students with developmental disabilities introduced to the workforce as young as twelve years old, in internship-type positions. When asked, people with development disabilities overwhelmingly report as one of their top priorities: “a fulfilling job.” So let’s make that happen! Sounds like a win-win for everyone to me.

I could say a lot more, but those were the real highlights from the conference for me. Despite feeling semi-lousy and having to slip out numerous times for coughing fits, I am really glad I went! I feel much more comfortable advocating for these important issues now that I have a better understanding of what’s behind them.

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