Letters are going out this week to 249 individuals with developmental disabilities from the State Department of Human Services telling them how to pick up their checks for extra funds. The extra dollars were restored to eligible individuals with developmental disabilities by a new state law sponsored by State Senator Mary Hodge and signed into law by Governor Hickenlooper this past week. House Bill 1177 restores the Home Grant Allowance in amounts ranging from $200 to $475 per month to individuals with developmental disabilities who are eligible to receive them.
Senator Mary Hodge explained to Catherine Strode, Health Care Advocacy Program and Outreach Coordinator, why House Bill 1177 was needed.
Senator Hodge, what is the intent of HB 1177?
“House Bill 1177 was a Joint Budget Committee Bill. The families who are affected brought Representative Dickey Lee Hullinghorst and Representative Dave Young here to speak to the Joint Budget Committee. It’s to remedy an unintended consequence of House Bill 10-1146 which didn’t mean to leave about 240 some people without help. They needed their home care, they made a choice, and either this passes or they have to go into nursing homes because it just cannot be taken care of. That was the intent.”
What was the issue?
“The families of the affected clients were formerly in the Home Care Allowance Program. They were forced to choose between two programs. One of them was the Supported Living Services; the other was the Children’s Extensive Services and they were near maxed out on their benefits which meant they didn’t have any way of paying to have people help take care of them or provide for some of their living expenses. It is a very small group of people but a very necessary item in their lives. Without the home health care would they would have to go to nursing homes. They were that close to the end of their waiver and they had no money to pay for those services.”
What does this Bill offer them and who is eligible for the support it provides?
“It’s a grant program for those people who are receiving services through either the Children’s Extensive Support Services or Supported Living Services, Home and Community Based Waivers, to receive home care allowance. It allows them to get the Home Care Allowance which will keep them out of nursing homes. It’s about 250 families. They are people who are near their max in services in the other program.”
How does the financial background of HB 1177 work?
“We have already appropriated money out of our general fund, which is sales and income taxes that people pay to the State of Colorado. The Home Care Allowance – we’re just going to take some of that already appropriated money and put it into the grant fund for these people who need this help. Putting these people into nursing homes is far more expensive than keeping them in their own homes, with their own families, with their own caregivers. This is a general funded program and it will come out of the existing home care allowance appropriations. So it’s part of what we already have. We just send it in a new direction. It covers things like buying your toothpaste, paying your rent, or whatever you needed to stay in your home.”
How long is this funding available for?
“This bill will expire in July of 2017.”
Legislator With Commitment to DD Services Asked to Carry Transfer Bill
Representative Bob Gardner, from Colorado Springs, has been asked to sponsor a bill that would transfer services for the developmentally disabled from the state’s Department of Human Services to Health Care Financing and Policy. Throughout his legislative career, Representative Gardner has advocated for funding to provide services and programs for the developmentally disabled.
In an interview with Catherine Strode, Health Care Advocacy Program and Outreach Coordinator, Representative Gardner explained why he has been asked to carry the HCPF transfer bill and why his personal commitment to the issues of the developmentally disabled has been the most rewarding experience of his service in public office.
Why is the transfer of services being proposed?
“A lot of people have told me that the move of DD division to HCPF needs to happen. A lot of the question is about the details and what the plan is. The way it’s been simply described to me, for those people who have reservations right now, is that we need to hammer out the details before we pass a bill. Others have said, ‘no this needs to be done and we need to get it done this year.’ So I think what’s interesting about it right now is an acknowledgement by most of the stakeholders that I’ve talked to that DDD needs to move to HCPF because of the connection with Medicaid. I think whether it happens this year or next year, I think that it is going to happen and even though a bill has not been introduced, I think we’re already in the phase of discussing details and I have to confess that at his point I don’t know that I can talk a lot about those little details. I’ve just gotten a draft of the bill and I’m going to look at it. I’ve had some people say to me that I absolutely am the right person and I need to be on board. I’ve had other people say to me that it is something we should proceed with very carefully.”
Why are you the right legislator to potentially sponsor this bill?
“I’m being asked to sponsor it because of my history of commitment and because I have credibility on the issue. I have credibility in my caucus, and I can understand the governmental and regulatory issues because there a lot of them. All of these issues with the developmentally disabled community raise issues about conflicts of interest, providing services, who oversees whom, are we doing it right, are we imposing too many safeguards so it increases the cost. The best of everything about the operation of government and what can be done well – and what can be done wrong – come together in the providing of DD services. People with developmental disabilities have incredible needs, their families have incredible challenges and ironically the politics in public policies surrounding providing the services are phenomenally complex. So it’s hard when their advocates and their families encounter the whole system.”
How is it that you have this strong commitment to the DD issues?
“A lot of people may have a family member with developmental disabilities, I don’t. The issue sort of found me. In my first session in the legislature, I was asked by the minority leader to serve on the Interim Committee on long term care services. I was a little puzzled as to why I was asked at the time. It turned out it was a very good reason. I actually had worked as a campaign consultant in El Paso County on a referred measure to try to get an additional one cent sales tax for DD services. That was unsuccessful. But I worked on the campaign and the people who were in the community at the time when the long term care and waiting list Interim Committee was pulled together said, well Rep Gardner knows something about the issues – we’ll ask him – the education of that member will not be as great. “
Did it grow from that?
“It did grow from that. And we can make a difference. This is an issue that doesn’t have partisans. This is the number one issue which I personally work with legislators who agree with me on absolutely nothing else. Funding for people with developmental disabilities, and programs for people with developmental disabilities and their families, and providing the services, is something that is the proper role of government. It is proper for us to struggle to find the funding, to do what we can. It is an issue that I have found personally rewarding. “
How has it been rewarding?
“I did a bill that came out of the Interim Committee to set aside contracts to provide jobs for people with developmental disabilities and what’s been so rewarding for me about that is to literally have people who have real jobs because of that bill and their families to walk up to me somewhere and say, ‘ I have a job. You’ve made a difference in my life.’ You know we do an awful lot of stuff in this building and you have to walk away and say, did it matter to anybody? This is an issue where when you do something and you do it in a way that works, people walk up to you and go ‘you made a difference in my life – my life is better because of something you did.’ That’s hard to find in the world today.”
The Waiting Period
“How much of human life is lost in waiting.” — Ralph Waldo Emerson
In order to enroll in Medicaid waiver programs in Colorado, adults with intellectual or developmental disabilities (I/DD) must meet certain criteria in determining their eligibility. This criterion, determined by the Colorado Division of Disability, is also used to determine the level of support needed by the individual in order for him or her to lead an active, quality life in our Colorado communities.
Medicaid waiver programs enrollment for individuals with I/DD in Colorado are in great demand. Advocates at AdvocacyDenver oftentimes support clients with enrolling in these programs. Once applied and approved as eligible, clients can anticipate varying wait periods for actual enrollment.. If an individual with I/DD does not apply for enrollment at age 14 –and this can be the case for a plethora of reasons- he or she will end up experiencing a waiting period where access to Medicaid services and supports is limited.
During this waiting period, individuals with I/DD oftentimes refer to natural supports such as friends or family to help them participate within their communities. Community organizations can play a role in helping individuals waiting for Medicaid enrollment too. AdvocacyDenver has a long track record of supporting such individuals with I/DD in locating safe and affordable housing, access to health care, and accommodations in employment. Mission Supports, a new non-profit organization in Denver, is also working to specifically alleviate the barriers experienced by those waiting for Medicaid program enrollment. The organization provides on-going monthly check-ins with adults to identify areas in daily life that they may need support. It also is working towards providing educational opportunities to improve skills such as money management.
While there may not be any imminent decreases in waiting list periods in the near future we, as a community, can continue to be aware of the waiting list for Medicaid disability waiver program and provide our friends, neighbors, and family with support they need while they are waiting.
Legislator’s Sister’s Disability Spurs Reform Bills
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.”
Action Alert: Stop Children From Being Tried as Adults!
Legislator’s Pastoral Work Motivates Bill for Pregnant Women
House Bill 1100 will be signed into law this week by Governor Hickenlooper. The bill allows pregnant women to enter treatment for substance abuse without being prosecuted for using illegal drugs. Chair of the House Health and Environment Committee, Representative Ken Summers, is sponsoring the bill. Before running for office, Representative Summers spent 28 years as an ordained Pastor of an evangelical denomination and has served as an Executive Director of a faith-based nonprofit organization that rehabilitates individuals fighting substance abuse.
He told Catherine Strode, Coordinator of the Health Care Advocacy Program, this personal experience motivated him to sponsor HB 1100 to protect the unborn children of moms who are addicted to drugs. Following is an excerpt from that interview:
If a woman has abused illegal substances, and is pregnant, how does this bill support her efforts in intervention?
“What the bill says is that in criminal proceedings, information related to substance abuse that is obtained during a screening or test performed during pregnancy, is not admissible. This is where the bill itself -we’re not overly prescriptive in the bill. We worked actually closely with some of the individuals through our Human Services Department and the Substance Abuse Task Force and the Attorney General’s office to craft something that was not overly prescriptive to create issues, but as part of the follow-up to the bill. A lot of legislation happens not so much as what is articulated specifically in law, but what happens as a result of that law being applied. So there will be some concerted efforts now from the state …to encourage women, all women, to get the proper treatment if they’re pregnant; and, …to make sure that those health care providers, doctors, OBGYNs, who are interfacing with that woman, know that if you suspect or think that this woman is abusing illegal substances whether it is divulged in an interview or that which is detected through an actual medical test, that it is important for you to get that woman referred to treatment.”
So the bill was really a perfect match for your own personal passionate pursuits in social rehabilitation?
“It really was. Because of that it was really something that I could identify with and understand the need for, and it was more than understanding it from a remote policy standpoint. I could understand it because of the women that we deal with and the programs that we have. When we look at it, you know we think of the challenges where women who are abusing substances are having children. We talk about intergenerational poverty. We’re in a situation now where we’re seeing more and more intergenerational substance and drug abuse. We have women who are mothers of children who’ve got addicted to drugs because of their mother when they were young. For example, one of our moms said ‘I first started using drugs when I smoked pot with my mother when I was fourteen years old.’ Now she’s an adult with a baby but now it’s not marijuana, it’s meth, and is finally dealing with her addiction issue.”
What variety of groups came together to make this bill happen?
“When you look at it, I carried the bill, but it was really the work of the Drug Endangered Children’s Task Force, the Division of Behavioral Health, and Denver Health in their psychiatric drug and substance abuse department. And so we had those organizations coming together. The March of Dimes came out in strong support of the bill because they realized this was about child protection. So with their efforts at mitigating the impact of disabilities that happen during pregnancy, the March of Dimes was very much in favor of the bill and recognized the value of it. The bill, while it can be somewhat misleading in its simplicity, really does have the intent of intervention and protection. Intervention for the mom; protection for that unborn child to make sure that we can minimize the devastating impact of substance abuse on pregnant women.”
March Is the Month to Make Your Mark
Thanks to the advocacy efforts of The Arc in the 1980s, President Ronald Reagan officially declared March to be Developmental Disabilities Awareness Month in 1987. For nearly a quarter of a century, The Arc and its network of 700+ chapters across the country, including AdvocacyDenver, have fostered respect and access for individuals with intellectual and developmental disabilities. We have made tremendous progress in promoting and protecting the rights of people with I/DD and creating opportunities for them to live, learn and work as valued members of their communities. But there is much work left to do.
In 2012, a pivotal national election year, we are fighting to protect support systems in the face of tough economic times and drastic budget cuts. Since many people with disabilities rely on publicly funded services to fully participate in their communities, policymakers and candidates need to know you concerned about continuing these vital services. Take advantage of Developmental Disabilities Awareness Month to make your mark on this election by getting involved and getting active today.
What Can You Do?
• Jump in. Contact AdvocacyDenver to volunteer or donate.
• Speak out. Contact your legislator or candidate today and let them know you expect them to support public policy to assist people with I/DD.
• Spread the word. Educate yourself about issues important to the I/DD community then tell the world what you found out. Use March as a great excuse to post your positive thoughts about the I/DD movement on your Facebook page or Twitter account. Follow AdvocacyDenver on Facebook and Twitter and express yourself. Or go “old-school” with a good, old-fashioned letter to the editor of your local newspaper explaining to your community why they should care about I/DD.
Join us during March to help raise awareness. Find out more about I/DD and what you can do at www.advocacydenver.org today!
Personal Tragedy Drives Support for House Bill 1085
How does HB 1085 affect the well-being of this particular population?
“It will give equal access to our justice system. Right now a developmentally disabled person who’s been sexually assaulted often doesn’t know to call 9ll. Most of the time these people are taken care of by someone else – a guardian, and so when they do tell someone that they have been harmed, typically it’s not going to be to the police right away. It’s just not in their mindset to do that. They’re going to tell someone else about that crime. And right now – when they tell someone, that information, that statement is not permissible in a court of law. So basically, what 1085 will do, it will allow the opportunity for those statements they made in a safe environment, to someone they trust, to be considered. Then the judge still has to determine if it has reliability and merit. So it’s not automatic. It still has to go through a variety of different channels. But prior to this bill there wasn’t any access for those statements to be entered into a courtroom setting. And so because of that, that gives validation to this community that if you are harmed, there’s an opportunity now that the statements that you share with someone else may be considered.”
Why is this particular population so vulnerable to sexual assault?
“You know, I believe it’s because they’re kind of voiceless. Many of them don’t have the same kind of communication that we have – and so their communication is different. And a lot of times people who care for them understand that basically they can’t defend themselves their whole vocabulary is different and I think people who prey on this population know that. They know that that they can probably get away with this kind of crime because statistics say that 42 per cent of those in that population who have been assaulted are assaulted again because they don’t report it. And if they do report it – very few of those times do those trials go on to court.”
How did this bill come to you?
“Good question. It came to me by an advocacy group that has a host of people on it. It has a couple of DA’s on it from the 18th district, also from Denver DA’s , the aurora police department, and the ARC population and they were just looking at what can we do to tighten that loophole when it comes to that population being assaulted because statistics say that 80 per cent of people developmentally disabled people will be assaulted and 32 per cent of men. That’s a high number. And at this point only one percent goes to trial.”
I’ve listened to your arguments on the floor and you are quite passionate and I just wanted to know what it is about this issue that stirs your own personal passions?
“For me it was because of my own personal tragedy. My son was murdered and I was his only voice and presence in the courtroom. He was silent because he was dead. And he was murdered because he was going to be a witness in a trial and so I had to bring voice to his testimony because he was no longer with us. And so that reminded me of this population. This same population doesn’t have a voice, they don’t have an advocate. And so I was glad to be their advocate, so they could have greater access to justice because when someone does something wrong, they should be held accountable for it. And if these people are revictimized over and over again because they don’t have a voice. Then some thing needs to be done to correct that injustice.”
How do the advocates feel that it will affect their work if the bill is passed?
“I’ve gotten such support from the advocacy community because basically I get the impression that this is an area that has just not been addressed. It’s not been something that anyone wants to talk about. Seven other states have this similar law – so Colorado’s not going to be the first. We will be the eighth. Who knows if any other states are considering it but only seven other states have this law. This law is modeled after the same language of the law we have for children who have been sexually assaulted. Now . that law came into place in 1983. It has been vetted and constitutionally it’s sound. So we’re using the same language and verbage for that population. We’re just now making sure that those who are developmentally disabled have the same option.”
For those who say it will be a double edged sword for those who are defending the same population – what is your response to that?
“You know, I have great confidence, in our criminal justice system. The way our criminal justice system is set up is to make sure the scales are balanced and so I’ve sat through court proceedings and anything that’s not considered reliable goes through a variety of different measures and protocols and I have confidence that if it has merit and proves that it can be used in a court of law and can go through all those hurdles, I think it’s going to be just fine. I think our system is big enough and great enough and strong enough to find justice in any situation.”
State Medicaid Director Suzanne Brennan Discusses Gaps in Speciality Care
Listen to Part II of the interview
What are some of the gaps that you see in the service delivery system as it is currently?
“Access to specialists for sure. There are some gaps there. There not a lot of specialists that actually take Medicaid clients. We’re also seeing that there are fewer and fewer providers that accept Medicare as well. So were seeing some general access to care issues.”
How is Colorado’s approach different from other states in coordinating care under the dual eligible program? How do you think it will differ?
“Colorado is on the forefront in terms of implementing an accountable care organization –that we call the ACC, the accountable care collaborative. And many states are coming to us to understand. what we are doing with our ACC program and how is it structured. So that is very different than other states. The other thing we’re looking at is how do we make sure that we’re connecting some different systems of care. So we have a very good PACE program in Colorado that is designed for individuals that meet nursing home level of care. We want to make sure we keep that and that we build on it. We also have Medicare special needs plans as well that do some coordination for dual eligibles, but there’s a large number of dual eligibles out there that are in the fee for service unmanaged network. We want to make sure that when we design the accountable care collaborative to meet the needs of the duals that it connects to the PACE continuum of care as well as to Medicare SNIPS. We’re working that out. So that to me is what’s kind of unique. We want to leverage what’s strong in the state and then build on that and make sure we’re keeping the connections.”
I know a lot has been said about the savings projected in the dual eligible redesign. Where would the savings come from and why do you think it would create savings for the state?
“Now we haven’t actually measured the savings but we believe the savings will come from reduced avoidable hospitalizations and reduced ER usage and reduced need for specialty care as well. So ideally, I view it I view it as the life cycle of an individual and how do you keep them healthier longer so they need less acute care? So the idea is if you’re really staying on top of what a patient needs and helping them to manage their chronic conditions like diabetes, high blood pressure, COPD, congestive heart failure, if you’re helping them to manage those conditions they’re going to need less acute care over time. So it will take time for the savings to accrue because you actually have to understand what’s happening with your patients, very proactively and then monitoring them over time. So this is not like flipping a switch in terms of cost savings – like okay we’re going to coordinate services for the duals and in six months we’re going to see savings. It’s going to take longer than that.”
State Medicaid Director Suzanne Brennan Discusses Dual Eligibles
Listen to Part I of the interview
“In Colorado we have approximately 71,000 individuals who are dually eligible for both Medicaid and Medicare. And those individuals actually represent 13% of our total Medicaid population. Those dual eligible individuals who are receiving Medicaid benefits account for 43 % of our Medicaid budget. That is about 1.2 billion dollars. It’s quite a large expenditure for a relatively small percentage of the population. Now that being said, these are very high need individuals. 60% of the individuals who are dual eligible are elderly, and 40% are actually individuals with some sort of a disability. So they have high needs and we want to make sure that we are serving them appropriately. 60 percent of those individuals actually have multiple chronic physical conditions and 20 % have more than one mental or cognitive condition. We want to make sure that we are coordinating care for them, making sure that they get all the services they need to deal with these intense physical and behavioral health conditions that they have.”
I’m aware that some states have started to design models for this Medicare/Medicaid integration. Which state would Colorado be modeling its design after and why?
“Now there are some states that are doing an excellent job in terms of redesigning their delivery system – with a focus on accountable care organizations and health homes and I’d say two of the leading states in the country are North Carolina and Vermont. Now they might not be specifically doing something around the dual eligibles but their work in coordinating care is so significant that that is really what we’re modeling ourselves after.”
In what way?
“Vermont has something called the Blueprint for Health and they have a very strong system they’ve designed that’s very integrated and systematic and has community healthcare coordinators who are very effective and work across different insurance products as well. So that’s one example. In North Carolina, their model is built on a very strong Medical Home model – and so that’s something we’ve built into our ACC for that very reason based on North Carolina’s success.”
What are the greatest challenges you foresee in creating this redesign of Medicaid and Medicare?
“I’d say some of the greatest challenges are making sure that we leverage the infrastructures we’ve already built and that they’re seamless connections. As I mentioned earlier, the idea that we do have a good PACE program in Colorado, we do have Medicare special needs plans, yet there are many people who are still in that uncoordinated fee for service system.We need to make sure we’re tying those things together and leveraging them appropriately. So that’s one challenge. I think making sure that we have an adequate provider network. Ideally, providers would take both Medicaid and Medicare so they can do a better job coordinating care for their patients.”