State Representative Dave Young, a member of the House Health and Environment Committee, is a passionate advocate for people with developmental disabilities. During this legislative session, he has supported several bills to help this vulnerable population. These include: House Bill 1177 to restore state support to families from the Home Grant Allowance, House Bill 1281 to pilot alternative payment systems for Medicaid, and House Bill 1230 to study redesign of long-term care delivery. Representative Young says he understands the challenges of individuals with developmental disabilities, and their caretakers, because of the years he has spent caring for his own sister.
He explained to Catherine Strode, Coordinator of the Health Care Advocacy Program, how living with his sister informs his legislative work.
How does that experience of living with someone with a developmental disability – how has that affected your views?
“It’s been quite a saga for our family because we came up before Public Law 94 -142 and she tried to go to school and it wasn’t successful and the school didn’t think they could work with her and sent her back home again and she’s pretty hard to serve. You see how mightily they struggle just for any services at all, which makes you wonder about our priorities as a society. I think a lot of times people think individuals with a developmental disability, it’s like a medical condition and they’re going to get better and we know that is not the case and they’re going to need a lifetime of care. And we see often kids age out of the school system and then they sit languishing on the waitlist for services. We see that and it’s a real concern.”
Which pieces of your legislation do you feel can have the greatest impact that you’ve sponsored?
“I ran a bill that got killed in State Affairs, House Bill 1230. It called for an external study of the entire system – how we deliver services. We’ve had a lot of internal stakeholder kind of studies where we get people together but there a lot of competing interests in this whole thing. I’m not sure we’ve ever had an unfettered, unrestricted, kind of look from the outside at how we do our business as a state with DD. We know there are some states that don’t have waiting lists. People say they don’t have the budget problem we do but I’m not sure I completely agree with that but I don’t really know. So I pushed forward a bill that called for a small group of legislators to select a qualified university to do the study, It would be funded by grants and donations. The study had criteria that I outlined: what are we doing now that’s effective and ineffective , what are other states doing that are effective, what kind of recommendations for redesign could be brought forward out of that study and have it delivered back directly to the legislature. It’s tough being a newbie and sometimes your bills don’t end up being in the right committee to be heard. I’ll bring it back again because I think it has value.”
With House Bill 1281 – you are proposing a pilot to reform Medicaid?
HB 1281 works within the existing Regional Care Collaborative Organization model but we’re giving them the option to submit pilot proposals to HCPF that would move away from fee for service models to other types of payment models. We had talked about global payment as an option and emphasized that in the bill. So we’re not trying to retool the whole system but we know we’ve got to get out of this fee for service model. Everybody knows we’re right now rewarding volume and utilization and now we’re paying the price for that with exploding health care costs.”
What’s been the most discouraging aspect of your work so far in the legislature?
My frustration is that there’s a lack of understanding with what some people are having to go through. I don’t think the general public understands how intense the needs are and what life is like for folks who are having to provide these services at home without any support. All the people that I talk to about what now is HB 1177 – the home care allowance issue –a lot of parents who were trying to provide these services – and the intensity and how destructive it is on their own life and their own physical health. So they spend down their life savings, they spend down their retirement. And I don’t think the average citizen is Colorado would put up with that if they really understood how desperate these families are in trying to just scratch out survival. I don’t know how to get that message out to people At some point we have to decide – what kind of a society are we? Do we care for those who are the most vulnerable? Do we not make victims out of families as a result of having a child that’s developmentally disabled? I don’t think we want that as a society.”