I drove a round trip from St. Louis to Kansas City, Mo., last week. I saw a lot of billboards — a lot. And I saw a fair amount of billboards advertising companies that provide home-based personal care services for senior citizens and people with disabilities.
Outside of St. Louis, the advertisements generally list the company name and emphasize that a person can receive assistance from an aide in his or her home. In and around St. Louis, a number of these kinds of billboards advertise Consumer Directed Services (CDS), saying you can get paid to take care of a relative. Everyone’s free to promote their company as they see fit, but those St. Louis ads make me cringe.
In 1993, Missouri started a Medicaid-funded home-based consumer-directed personal care program. Back then, it was called Personal Assistance Services (PAS). Twelve years later, the program’s name was changed to Consumer Directed Services. Same program, same regulations; different bowl of alphabet soup. I like the name change. It reminds us exactly what the intent of the program was designed to be: Consumer. Directed. Services. Let’s unpack.
When the program first started, it was all about the consumer (the person receiving the services). Many people with disabilities found themselves stuck in a situation they didn’t want to be in — either in a long-term care facility or facing long-term care institutionalization.
People with disabilities thought that if Medicaid was willing to pay for their care in an institution, couldn’t Medicaid pay for an attendant to care for them in their home? And if so, why couldn’t they be in control of that care? CDS offers just that.
Many people with disabilities are diverted away from institutionalization because they can receive care in a home setting that still meets their needs, yet allows them to be engaged and independent members of their community. Most often, this care costs less than institutionalized care. The MO HealthNet Division reports that the average cost per participant per day for Medicaid-funded long-term care totals about $119 for nursing facilities compared to about $27 for home- and community-based care.” CDS is one of these home- and community-based care programs.
Even now, when I read some government regulations for the CDS program, I can see the influence of amazing people who helped get this program started in Missouri. These were people who acquired significant disabilities like Paraquad founder Max Starkloff and Jim Tuscher, the former vice president of public policy at Paraquad.
Starkloff and Tuscher knew what it was like to live in a long-term care facility and to move back into their own home with the assistance of a personal care attendant they personally hired and managed.
Starkloff, Tuscher and many other advocates fought hard in the early days of this civil rights battle in Missouri to ensure people with disabilities could live a life of choice, opportunity and independence. That’s something most every human aspires to and treasures.
The consumer (the person receiving the services) directs his or her own care. The consumer is the employer of record. The consumer interviews, selects, hires and trains, and if necessary, fires an attendant. Consumer direction of personal care services includes scheduling and supervising attendants, telling them what tasks need to be done and instructing them when those tasks need to be done. The whole point of a consumer-directed personal care program is so the person receiving services can be the boss, be the conductor of his or her own care and be in charge of when and how most personal needs will be met. That’s the beauty of a self-directed personal care program — the person who gets the care controls the care.
Because CDS was created so the person receiving the personal care services is the one in charge, it’s inherently different than other home health care or in-home care type services. CDS is the square peg by design. But it’s frequently misunderstood, forced into systems that it doesn’t fit into and promoted as something it was never intended to do or be. That’s such a shame. CDS was brought into existence to be a service to no one but the person receiving the care, period. The whole point is to serve the needs of the consumer. Here are some examples:
- CDS operates under the consumer’s care plan. It’s our experience at Paraquad that most often a CDS care plan averages fewer than 100 hours of care each month. This means the average consumer receives paid attendant care for around 20 hours a week. Even if the consumer employs only one attendant, this still isn’t a full time job for that attendant. The care plan is designed around the consumer’s unmet personal care needs. And often consumers find that about 20 hours a week is enough to meet their needs. Some need more time, some less. It’s a personalized care plan. But it’s about what the consumer needs to live safely in their own home.
- The consumer is the employer. This means the CDS vendor (the fiscal intermediary) cannot assign more hours to an attendant because the attendant doesn’t work for the CDS vendor. Their hours are scheduled by the consumer they work for. If the consumer only gets 100 hours of Medicaid-reimbursed attendant care each month, that’s most likely all the paid hours the consumer (their employer) has to offer the attendant. And if the consumer decides to schedule their attendants for less than their care plan allows, the vendor will only bill Medicaid for what is worked.
- Reimbursement rates are set by the state. Although pay rates are often set by the CDS vendor, reimbursement rates are set by the state. And these reimbursements are a combination of state and federal Medicaid dollars. CDS vendors along with industry groups usually ask for higher reimbursement rates every year from lawmakers. Vendors sometimes get them, but not always. The state has even decreased reimbursement rates. In other words, CDS isn’t a publicly-traded company with an endless opportunity for revenue growth. It’s bound to the limits of Medicaid and state appropriations and it’s subject to change every fiscal year.
Now here’s where I get to those ads in St. Louis.
CDS was not created so that that someone could get paid for helping a relative around the house. Hear me out. This angle is one that has been heavily promoted in St. Louis, mostly in the past five years as the number of CDS vendors in this region has grown out of proportion.
As state legislators see these kinds of advertisements increase, they frequently point to “relatives getting paid to help relatives” as one of the big reasons why they do not like the CDS program. The sentiment is that all people using CDS hire family members.
At Paraquad, almost 60 percent of the attendants we run background checks on are related in some way to the consumer they work for. That’s certainly not all, but it’s more than half. Here are two thoughts about that subject:
- Unmet needs. While it’s true that CDS was designed so the consumer could hire the person of their choice to provide care, the intent of the program was never to have a paid attendant provide for “met needs” or take the place of existing support systems as outlined in the Missouri Code of State Regulations. For example, a person with a disability lives with someone who already cooks dinner. An attendant shouldn’t be paid to cook that meal just because the person with a disability gets CDS, unless it becomes an undue hardship as defined in the regulations. Those advertisements that say “you can get paid to help mom” miss the point of the CDS program, if the person has been helping mom all along for free without the presence of an undue hardship. CDS was never designed to get Medicaid to pay someone to do most common household tasks that an existing support system already does for free. Those who create care plans and those who approve care plans at the Division of Senior and Disability Services would do well to make sure they understand what “met and unmet needs” and what “undue hardships” look like. These important state regulations were put into place specifically to keep the program in check. When this basic rule is overlooked or ignored, things get out of hand.
- Consumer choice of attendant. Most advocates say that participants in the CDS program should have the choice of who provides their most personal care. People who use CDS often describe that having this choice is important because it is so personal. It’s personal in the nature of the care provided (e.g., toileting and bathing), and it’s personal in that they form a relationship of trust. They have to rely on that person to do these important tasks correctly and with dignity, and they have to trust them to be there when they need them. Each person knows what qualities make a good personal care attendant for them.
Some CDS participants feel that hiring someone who is not a relative provides for better care and makes for a better relationship with their family. Some feel that hiring a relative makes for better care and better peace of mind. I say the consumer should do whatever works best for them. Do what ensures the most independence, the highest level of care and best quality of life possible. I would want that choice. I think most people would.
CDS is Consumer Directed Services. It’s all about the consumer. The consumer is in charge. It’s for the consumer’s benefit. It’s all about the consumer’s best interest. CDS was created to serve the consumer. Please, let’s get back to that.
Jen Haycraft is the Director of Attendant Services at Paraquad. She can be reached at firstname.lastname@example.org.