What is “the waiver” and why is it important?
The “waiver” is the name given to a funding stream for persons with intellectual disability or autism. It is important because it is the major funding stream for persons with severe developmental disabilities. It is funded with two-thirds federal dollars and one-third state dollars.
For persons with intellectual disability or autism, there are really two waivers. One, known also as “the big waiver” or “the comprehensive waiver” provides funding for a full panoply of services, including staffed residential care, work supports or day program support, and other treatment services. That waiver is called the Section 21 waiver.
The other waiver is called the Section 29 waiver. It does not provide comprehensive services, and in particular it does not provide any residential services. It only provides day program or work support services outside the person’s residence.
The Section 21 and Section 29 waivers get their names from the MaineCare Benefits Manual. (10-144 C.M.R. Ch. 101; see Section 21 and Section 29) “MaineCare” is what Maine calls Medicaid. Section 21 of the MaineCare manual describes eligibility procedures and benefits for the comprehensive waiver and Section 29 of the manual describes work or day program supports. Section 29 came about as an alternative to Section 21. Section 29 is much cheaper to fund than Section 21 and in many cases is viewed as a stopgap measure until such time as the person can receive Section 21 services.
What is waived in the waiver?
In the late 1960s the Congress was very concerned about the poor quality of institutional care in the United States for persons with intellectual disabilities or autism. At that time almost all care was provided in state run institutions, and conditions in those institutions were abysmal. Maine’s Pineland was no exception.
In order to improve care, the federal government created a right for persons with intellectual disability or autism to receive nursing-level care. The federal government was willing to pay for two-thirds of the cost of that care, but along with the federal money came stringent regulations defining the level of care that persons who received the money had to receive. As a result many millions of dollars went into improving the level of care for persons with intellectual disabilities and autism in the United States. However the regulations created ICFs-MR, Intermediate Care Facilities for Persons with Mental Retardation (now known as ICFs-IID, ICFs for individuals with intellectual disabilities). These ICFs were in essence mini-institutions.
By the early 1980s many states, including Maine, were lowering the census of their state institutions by moving inmates to group homes in the community. Because group homes were less restrictive residential settings than ICFs, and usually less expensive as well, representatives of the states and the federal government recognized the mutual benefit of using this funding stream not just for ICFs but also for community placements. The states each had to submit comprehensive applications to the federal government, which would review the plans to insure that persons served would still have minimum standards of care. But the federal government would “waive” the ICF regulations and still be responsible for two-thirds of the cost of care.
How does a person become eligible for the waiver?
First, the person has to be found eligible for nursing home care. (10-144 C.M.R. Ch. 101 §21.03-4) DHHS hires someone, almost always a nurse, to do an assessment of the person. If the person’s disabilities are such that the person cannot survive without significant supports, the person is found eligible for nursing care.
However that nursing assessment is only the beginning. The person must apply for the waiver. Almost always the person’s case worker does the application and submits it to DHHS. It is important to use the person centered planning process to identify the need to make the waiver application. That way there is a written record of the assignment of the responsibility to make the application.
If only work supports are needed – usually this is when the person lives at home and does not desire to move—then only a Section 29 application is submitted. If both residential services and work supports are needed by the person, then applications should be made for both Section 21 and a Section 29.
Are there waitlists for Section 21 and Section 29 services?
Yes there are, and they have grown exponentially over the past several years. At the end of November, 2013, there were 853 people on the Section 21 waitlist, and 465 people on the Section 29 waitlist. As of the same date there were 280 people on both waitlists. There were 478 people receiving Section 29 services who are on the waitlist for Section 21 services.
How does a person get off the waitlist and into the receipt of actual services?
The Section 29 waitlist is purely chronological—first come, first served. (10-144 Chapter 101 §29.03-4) That is why it is important to apply as soon as possible. The Section 21 waitlist is much more complicated.
Section 21 of the MaineCare manual provides that DHHS can divide the Section 21 waitlist into three categories. (10-144 C.M.R. Ch. 101 §21.03 (A), (B), and (C)) These categories are in essence based upon acuity of need.
- Priority one is for people who have been determined to be in immediate adult protective danger. As of the end of November 2013 there were 75 people in priority one.
- Priority two is for people who are at risk of abuse if the Section 21 services are not provided, but the risk is not immediate.
- Priority three is for persons who are not at risk for abuse.
For several years up until this writing (January 2014) only persons in the priority one category have ever been selected to come off the Section 21 waitlist and into services. The decision about who is chosen within the priority one category is totally within the discretion of DHHS. (10-144 C.M.R. Ch. 101 §21.03-6) Because of the need to keep confidentiality, no one outside of a handful of persons within DHHS knows why a certain person within category one is chosen to come off the waitlist and others who are also at immediate risk remain on the waitlist. It is a closed system not open to any scrutiny.
Is there anything I can do to increase the chances of my loved one being chosen to receive the Section 21 waiver?
If the person in whom you are interested is in category two or category three, you can try to appeal the designation to get the person into category one. It is crucial, even if the person is already in category one, to report all reportable events and make sure that they are being recorded in the EIS (“Enterprise Information System”). The EIS is the name of the computerized data system for keeping track of information that DHHS has for persons with intellectual disability or autism.
There is a state regulation (14-197 C.M.R. Ch. 12 §603(C)(2)(a) and (b)) that governs what must be reported. Although no one in the general public knows exactly what information is used to determine the degree of risk to which any priority one waitlist client is exposed, it is known that reportable events are reviewed both for number, type, and acuity of risk presented. Therefore each and every reportable event that qualifies as a reportable event under the regulation should be recorded in the EIS. The person’s case worker can enter information into the EIS, and if that fails there are persons within each regional office who enter data, including reportable events, into each person’s record.
The personal planning process can be used as a forum to insure that reportable events under the regulation are actually entered into the EIS. The written report of the personal plan should specify who exactly will be held accountable for entry of reportable events, or transmission of information to the department so that the information can be entered.