While I agree that DHS worked very hard, this Self Direction, they are proposing, is the same that is available today under Family Care. It is NOT the Self Direction we currently have under IRIS. I have HUGE ISSUES and CONCERNS with the DHS Concept Paper. Here are just some of my thoughts:
On Page 4, paragraph 2 it states “For individuals currently in long-term care managed care programs, acute and primary care costs grew 10 times faster…For individuals currently in IRIS or a legacy waiver program, their acute and primary care costs grew 12 times faster.” Where can people view the data that was used to support these statements? Since my daughter has been on IRIS, she has not had even one hospitalization. Her physician regularly comments on how healthy she is now that she has the supports and services she needs. Prior to IRIS, she was hospitalized one to two times per year. I believe we see some increases in federal Medicaid costs because both managed care and IRIS moved people to use federal Medicaid to pay for personal cares rather than their long term care plans to save money for the state. That didn’t happen in the past and could explain some of the increases seen.
On Page 8 it states, “Each member will have a care team that is unique to the individual to develop a care plan that is custom tailored to the individual” This is NOT Self Direction, this is managed care! This team of people costs money and is often redundant. Currently, Guardians understand the supports and services a Participant needs and they express those in the Participant’s service and support plan for free. They put this plan together with the Participant’s IRIS Consultant (ICA) following all rules and guidelines and within budget. In the proposed, there would now be an entire team of people as well as the IRIS Consultant (who would coordinate the team), all of whom would be paid for this service, to determine and decide what services and supports a Participant needs. Personally, I don’t want a team of people telling me what is best for my daughter when they don’t even KNOW HER! I realize they will take input from me, but ultimately it is them deciding, NOT ME what her supports and services would be.
On Page 9 it states, “Self-directed budgets will be set after the IHA has completed an assessment and worked with the member to develop a member-centered plan. The member’s budget is based on the services the member elects to self-direct. DHS will approve and rigorously monitor the IHA assessment and budget-setting processes. Members will have the ability to appeal the self-direction budget to DHS.
This is NOT Self Direction, here again, a team of people who don’t know my daughter, will listen to me, but will be the ones that decide what is best for my daughter. I, her Guardian, should be the one deciding what is best for my daughter.
Any budget should be set on the individual’s needs as a result of their functional screen and complexity of care, NOT determined by, which services they choose to self-direct after a FOR PROFIT IHA does their assessment!
How exactly does DHS plan to monitor this? How will they determine that an insurance company (IHA), that is in business to make money, has allocated the appropriate budget for long term care for an individual based on "self-direction services"? What exactly does this mean? Has anyone ever tried appealing to DHS? What happens while a budget is being appealed?
On Page 14 it states, “DHS will require IHA’s to adhere to Act 55 requirements to contract with any willing and qualified provider of long-term care services.” Exactly how will this be measured? “As required by Act 55, this provision will be in place for a minimum of three years.” What exactly does this mean? Will AFH (Adult Family Home) providers or families who provide care now be out of business after three years and not acceptable as providers?
It goes on to say, “The IHA must allow any provider of long-term care services to serve as a contracted provider if:
The provider agrees to be reimbursed at the IHA’s contract rate negotiated with similar providers for the same care, services, and supplies; AND
Currently, rates are determined based on a Participants’ Functional Screen and complexity of service and support needs. The Caregiver or Guardian doesn’t decide what these rates will be, they are told what they will be based on the results of the Functional Screen which uses an actuarial model to predict what it would cost to meet the needs of the individual. Now, this paper suggests, a “for profit” insurance company (IHA) would now be the one determining those rates. Look at reimbursement rates in the industry today and you will see that it will no longer be economically feasible to support these individuals. If a caregiver today can make more money working at another job, they will take the job that pays more and is easier to do. Caregiving for the disabled and elderly is a very difficult position involving many tasks that aren’t easy to do. (Cleaning up bodily excretions and fluids, dealing with behavioral issues, etc.) The end result will be placing these individuals in restrictive nursing home settings which are much more costly.
The facility or organization meets all guidelines established by the IHA related to quality of care, utilization, and other criteria applicable to facilities or organizations under contract for the same care, services and supplies.”
To me, this is a conflict. The agency accepting capitated payments for individuals and paying for their care out of these payments shouldn’t be the agency determining the quality of care. It should be an outside agency or regulatory source. DHS should establish the guidelines for providers.
This is NOT Self Direction, currently a participant’s budget is based on a complex computer model that uses the functional screen to determine a budget. That budget is then used to obtain supports and services as determined by the Guardian and others. The results of the functional screen and other measures are then used to establish daily care rates for Adult Family Homes or Caregivers (providers). Here it sounds like the IHA (“for profit” insurance company) is setting the daily rate using very broad terms like “Similar providers”, “similar care”, etc. instead of the unique individual’s function screen and complex needs. They are trying to group people into boxes. Everyone is unique and different and what works for one doesn’t necessarily work for another!
What are the IHA established guidelines and again, why the broad scope? Every participant is unique and individual and has special needs. They shouldn't be grouped in with everyone else that the IHA determines has similar needs especially when the IHA doesn't know the participant, the guardian(s) should be determining this.
If a court of law determines that a guardian is responsible for these kinds of decisions, why are they now no longer responsible but a “For Profit” IHA is? Isn't this a conflict with the very essence of what Guardianship is?
“If the IHA declines to include an individual or group of providers in its network, it must give the affected providers written notice of the reason for its decision.” THIS IS VERY SCARY! Chrissy depends on me as her provider. She has many valid safety and medical reasons (including that she was born with a contagious disease and can infect people with cytomegalovirus) which is why many others CAN’T be her provider. What if the IHA declines to include her AFH as a provider and provides 30 days’ notice? Is she then expected to move? To leave her family and the only life she has known? She would then be forced to live in a much costlier nursing home because of her complex needs? When she is hospitalized she is automatically put in isolation, how would a nursing home deal with this? Would she have to be isolated there too? What about least restrictive environment? In her AFH, her care providers have already been exposed to CMV and can safely handle her bodily excretions and fluids without worry of contagion. It only makes sense for her to continue to be provided for in her own AFH.
“In establishing provider and management subcontracts, the IHA shall seek to maximize the use of available resources and to control costs.” Again, this doesn’t sound like Self-Direction. If the IHA doesn’t accept who you choose as a provider, then you cannot choose who provides your care. Caregiving is a very difficult job, everyone wants to ensure our loved ones are cared for. Caregivers already are doing this for rock bottom wages considering the work they do. If the participants were placed in nursing homes, it would cost so much more. Those of us providing in home care are saving the state greatly in taxpayer dollars. Yet, caregivers are being expected to accept even less so an IHA can make a profit. The current MCO model works and has improved the lives of so many. Promises were made that things would be improved under the new system. This remains to be seen.
On the Addendum, what does “Care Management Services” mean?
As her guardian, aren’t I responsible for her care management and what services she needs in coordination with her doctor?
Am I unable to continue with “Home Care Medical” as her medical supply provider?
Will the IHA tell me she can’t continue to use her Bard gastrostomy button and supplies because it is more costly than the “Mic-Key" gastrostomy buttons? Her physicians and I determined that the Bard button was the only button she couldn't rip out of her stomach. She has ripped "Mic-Key" buttons out in the past.
I determine her durable medical goods and medical supplies based on her needs. Again in coordination with her physicians, who provide the necessary prescriptions. On the addendum, these items can’t be Self-Directed. I do know better than the IHA what medical equipment she needs, does this mean I am no longer allowed to decide?
What does “Home Health” mean?
Why are drugs “Fee-for-service” and not medical supplies and equipment”?
I used a large chunk of Chrissy’s budget for Physical Therapy, according to the addendum, that can’t be self-directed either. Does that mean she can only get the physical therapy that Medicaid covers (which is only therapy needed after an injury and doesn’t include maintenance therapy)? This is HUGE for Chrissy because the physical therapy she receives twice per week is critical for her digestion, prevention of painful muscle spasms, organ health, etc. There are very complex reasons why she needs her physical therapy. IT is what has been keeping her alive. Without it, her quality of life would be drastically reduced and she very well could die.
How do you protect participants in the event an IHA pulls out because they aren’t making enough profit?
What protection & safety net is in place to ensure our most vulnerable are cared for?
WPS has already pulled out of Washington County and will no longer provide insurance in the private market because they can’t make money. United Healthcare is threatening to pull out of the marketplace. What happens if an IHA pulls out because they aren’t making enough money and suddenly thousands are left to fend for themselves? What protections are in place to provide a safety net because that would probably be a huge burden to other IHA’s in the state to suddenly take on thousands more.
I propose DHS work with the great elderly & disability advocate organizations in our state to identify ways to cut costs and improve the future for all! Wisconsin Long Term Care Coalition put together an amazing Stakeholder’s Blueprint for LTC Redesign. Their suggestions should be implemented in any redesign of our LTC system!