State Senator Linda Newell is sponsoring Senate Bill 127, ‘Medicaid Health Homes Long-term Care Providers.’ The bill creates a provision for long-term care services to be included in Medicaid health homes for those individuals who are “Dual Eligibles” – or – eligible for both Medicare and Medicaid benefits. It ensures that these services will be included in the Accountable Care Collaboratives established under the guidelines of state health care delivery reform.
To ensure passage of the bill, State Senator Newell brought together a wide range of stakeholders including representatives of: senior organizations, hospital associations, assisted living facilities, and insurance plans. She told Catherine Strode, Program and Outreach Coordinator of the Health Care Advocacy Program, that negotiations over the final version of the bill resembled ‘turf wars.’
Senator Newell, please explain the intent of the bill and who brought it.
“The intent of SB 127 is to make sure that those who are dually eligible do not fall through the cracks and that they are allowed to get every service they possibly can being dually eligible. So we first worked with Leading Age Colorado on it, and then after that, the Colorado Health Care Association and the Center for Assisted Living. They came on board. Then the Behavioral Health Care Council came on board. And then AARP came on board and total long term care. Those are the major stakeholders. We also included Rocky Mountain Health Plans, United Healthcare, all of the major health care plans that cover this population. With all of this health care reform, we want to make sure that as they’re developing these Accountable Care Collaboratives and the Regional Care Organizations, they remember the long term care dually eligible. We wanted to make sure that as the Department of Health Care Policy and Finance is putting their rules together, that they are providing coordinated care. We want to make sure that the mental health or behavioral health care needs are met, not only the chronic condition. The integration of the care was really critical. To me that’s one of the most important parts of this bill – that it does promote that integrated care model.”
How would the bill be implemented?
“It’s very general and broad on purpose. So that as HCPF is putting their definitions together, it is allowing for all of these long term care providers to be at the table. Nobody is left out. It’s more of one of those bills that lays the foundation prior to the action. It’s putting into statute, and directing HCPF, to include the providers of long term care and services as part of their health home when they’re putting together their programs.”
What were the stakeholders’ concerns about SB 127?
“HCPF said they would be promulgating the rules around it but the stakeholders thought we needed to direct them to do it now because we don’t know what it might look like as they go about it. We had to work with the insurance plans to make sure that we came up with all of the language that they felt was broad enough but wasn’t restricting. On the other hand, one of the concerns was we didn’t want anything in statute with a definition that would give preference to any one kind of long term care provider or an insurance plan. So we wanted to make sure we were on equal footing. Once we came up with the language for that, – we did get it passed unanimously.”
What did you learn in promoting this bill?
“Like anything else in this building, it’s sad to see so much energy on turf wars as opposed to care for long term. The concern was “We don’t want them to have preference in the statute.” What makes me sad sometimes is – where’s the patient in all of this? They’re all so worried about their own political stature or their piece of the pie. The patient gets lost, I think, sometimes. For me, as someone who has worked closely with people who are dual eligible, it’s just wrong. These are our most vulnerable and we should be looking out for the patient. The good news is we did all get to the table and we all did come up with something that was equitable.”
House Bill 1226, sponsored by Representative Mark Barker, imposes a surcharge on persons convicted of crimes against at-risk persons. The bill would allow the surcharge to be placed into a fund to be used for programs that provide respite services for caregivers.
Representative Barker is the guardian of his deceased sister’s 30-year-old son who is developmentally disabled. In an interview with Catherine Strode, Program and Outreach Coordinator of the Health Care Advocacy Program, Representative Barker said the death of his sister inspired him to support the well-being of all caregivers by sponsoring this bill that would fund respite care.
What made you bring this bill to provide funding for respite care?
“It appealed to me because I have a nephew who is developmentally disabled and he’s currently in a care facility so he receives the 24 hour care. But I’m his guardian by default. My sister died and she had cared for him from birth. And for many years she couldn’t have a job because he required 24 hour day care. She had the family to call upon when she needed to go to the grocery store, go shopping, and to do other things and so she would drop him off with one of us. So she had some support. But her health deteriorated, she never had money, she was always in a really bad situation. He has -like most people who are developmentally disabled, they have other problems -seizures – and – things like that. So it requires someone who knows what to do in those sort of situations. So it appealed to me. She died. I think it shortened her life dramatically because of having to deal with this all that time. I really feel like respite care is essential for people that are caretakers and I think the money that we put towards that – whether it is from the perpetrators of crimes against the at-risk adults – whether they be developmentally disabled, or Alzheimer’s, or whatever, identity theft is a big one – is well spent. Because by providing respite care to the family members and guardians who are providing that care – we are preventing them from going on welfare, food stamps, housing, they’re able to maintain more of their self support – and care for this developmentally disabled person or otherwise ‘ at-risk adult’ with less public assistance.”
What kind of need is out there that was expressed in the testimony?
“I think hearing from the parents and from the caregivers that they have no time, they have no sort of replacement shift – at the end of an eight-hour shift, at a care facility, someone else takes over. At home, when they’re a parent, or a child of an alzheimer’s senior citizen, there’s no new shift coming on. It’s 24 hours a day, seven days a week. And there’s no shift coming on to replace you.”
What are the mechanisms financially behind the bill to make it work?
“This doesn’t charge anyone any funds who’s not been found guilty of committing a crime – but if the Judge chooses to use that option of assigning a fee – a surcharge – to the perpetrator of a crime against an at-risk adult – then the funds that are paid in by that perpetrator would go into that special fund for the respite care. And those funds will be administered and dispersed to organizations who meet all the requirements of the funding and that is to be set up. They have to be bonded and licensed and they have to have certain types of facilities and their people have to be trained and they have to have guarantees that the people are going to be adequately equipped to deal with the needs of the people that are going to be dropped off into their care. So it flows from the perpetrator to the fund- and in the fund to the provider- and the Department of Human services. We were actually looking at several different state organizations and I believe that’s the one that was found to be the most practical. But from that they will administer it only to make sure that the funds are used properly and then it will go to the agency that is providing the respite care.”
Will there be enough money in the fund to support respite care and is this something that can grow?
“It can grow and the reason I believe it will is partly because we have a bill that is to fix the identity theft statute that was sort of crippled by a supreme court decision. If that bill for the identity theft statute passes, it will allow prosecutors to directly attack that crime. A large number of the people who are the victims of identity theft are senior citizens, at-risk adult. And if they’re convicted of a crime against an at-risk person, and the judge chooses to apply the surcharge, then those funds can go into this respite care. I believe that with the passage of the identity theft bill, there will be an increase over time of surcharges that are applied to these perpetrators. Also, it’s my understanding that if the state, the legislature passes this bill, the respite care bill, that it may attract other investors who see the need then. So in a way what we’re doing is we’re creating a surcharge fund that will be sort of symbiotic and maybe even seed money for other investors to come in and look at donating money for these sort of respite care facilities.”
What is your answer to those who say ‘it won’t provide enough money?
“It draws attention to a problem. Nobody was under the illusion that this was going to create a multimillion dollar fund as a sole source of funding for respite care. But it draws attention to the need and hopefully more sources of revenue for the respite care.”
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.”
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.”
“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.
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.”
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.”
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?
• 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!