For many people, having assistance from a reliable and qualified personal care attendant is a key part of living an independent life full of choice and opportunity. Thankfully, many men and women before us helped create programs and services to give us easier access to personal care attendant services.
Paraquad was instrumental in helping to draft legislation that started Missouri’s first self-directed personal care attendant services program 30 years ago. Paraquad’s leaders were committed to making self-directed personal care services accessible because they believed people with disabilities have a fundamental right to have a say in how they live their lives. We still believe that today.
Advocates in Missouri, including Paraquad’s founders Max and Colleen Starkloff and Paraquad’s Policy Director Jim Tuscher worked to make sure people with disabilities in Missouri have the ability to access self-directed attendant care in their home.
For The History Buffs
An opportunity to work. In 1985, the first self-directed attendant services program (the Non-Medicaid Eligible (NME) program) was started. It’s expensive to pay a personal care attendant out of pocket, and private-pay personal care services aren’t affordable for many people with disabilities who want to work. But someone with a physical disability could obtain and maintain gainful employment if they had a paid personal care attendant to assist them with getting out of bed and preparing for work in the morning. The NME program was created so people with physical disabilities could continue to be employed or find employment. It provided state-reimbursed, self-directed personal care attendant services through the Division of Vocational and Rehabilitation Services. The program was very successful and many people with significant physical disabilities were able to have quality full-time careers. But because of past legislative opposition, the NME program is no longer open to new enrollees. Today, only about 40 people are on the NME program — but many of them still have successful careers, in part because they have personal care assistance.
An opportunity to remain in the community. In 1993, the Medicaid-funded Personal Assistance Services (PAS) program was started under the oversight of Vocational Rehabilitation. The program continues today under a different name and different department’s oversight. The focus of this program is for people with disabilities to hire a personal care attendant of their choice, to direct their own care and to live in the community. Many people who are at risk of going into a nursing home are able to remain in the community because of this program. And people who are in nursing homes are able to return to the community because they can receive the personal care services they need (at a fraction of the cost) and are able to direct those services on their terms. The program is said to have grown to around 8,000 participants statewide by 2005.
An opportunity to maximize services. In 2000, the Independent Living Waiver (ILW) was started in Missouri. This allows people with a disability aged 18 to 64 with high personal care needs to receive additional hours of paid personal care attendant services that exceed the maximum hours allowed under the PAS program. Individuals also receive some assistance to purchase specialized medical equipment and medical supplies and obtain some financial assistance toward environmental accessibility adaptations. Those on the ILW are able to remain safely in a home setting with these additional hours and supports. The ILW still exists and the total expenditure (state and federal portions) must continue to show cost effectiveness compared to nursing home costs.
An opportunity to receive independent living services. From 1985 to 2005, only Centers for Independent Living (CILs) were contracted as vendors with the state of Missouri to provide NME, PAS and ILW. For two decades, Paraquad and just over 20 other CILs in Missouri provided PAS case management, independent living skills training, information and referral services, peer counseling and support and personal and systems advocacy to those receiving NME, PAS and ILW.
An opportunity to pick another vendor. In 2005, the Missouri Department of Health and Senior Services (DHSS) took oversight of the PAS program and it was renamed the Consumer Directed Services (CDS) program. This change made sense because the program had dramatically shifted from an employment focus and had grown tremendously into a home- and community-based personal care services program. The DHSS also offered anyone the opportunity to apply for a contract to become a CDS vendor. Within 10 years the number of CDS vendors in the St. Louis area has grown from just over 20 to nearly 300 CDS — and that’s just in the St. Louis area! This number is startling. It means that about 80 percent of all vendors approved to provide CDS in the entire state of Missouri are now providing services in the St. Louis area alone.
In 2015, Missouri reports that more than 26,000 people are utilizing the CDS program for personal care attendant services. Since 1993, the name of the program has changed, oversight has changed and the CDS program has grown by nearly 20,000 people. Surely this is beyond all initial projections and possibly all intent. But in the midst of this growth and change, has the real purpose of the self-directed attendant care program been forgotten and maybe even neglected? Just in case, here’s a reminder of why the self-directed personal care services program was started:
People with disabilities should have the opportunity to live in the community instead of living in a nursing home. People with disabilities should have the choice of hiring a personal care attendant to provide necessary assistance. People with disabilities should have the independence to direct their own services.
And that lines up with Paraquad’s mission statement: To empower people with disabilities to increase their independence through choice and opportunity.
It’s really all about the person with a disability playing a starring role in how they get to live.
Self-Directed Personal Care Attendant Services at Paraquad
Paraquad has been providing self-directed personal care attendant services in St. Louis from the very beginning. We know what the CDS program is really all about because we helped start it. And because we’re a Center for Independent Living, we continue to provide the same core independent living and advocacy services we always have. Our participants know they can trust us to provide quality services and to do CDS the right way.
If you have a physical disability and require assistance with personal care to remain safely at home, one of our self-directed personal care attendant services might be a good option. You can read more about the CDS program requirements or about our new private-pay attendant matching service MyDirect. Contact our Information and Referral Department if you have specific questions about any of our other programs at Paraquad.
Jen Haycraft is the Director of Attendant Services at Paraquad. She can be reached at firstname.lastname@example.org.