Waiting Lists for Medicaid Waiver Programs

A Report of Findings from an Environmental Scan of the Use and Management of Waiting
Lists for the Ohio Department of Developmental Disabilities

Prepared for the Ohio Department of Developmental Disabilities

National Association of Directors of Developmental Disabilities Services

Laura L. Nuss

March 2017

pg. 1 Final Report March 06, 2017

Background and Methodology
The Henry J. Kaiser Family Foundation 2014 waiting list enrollment data for ID/DD 1915(c) Home and
Community-Based Services Waivers indicates that thirty-five (35) states maintained waiting lists for
ID/DD services.1 The Ohio Department of Developmental Disabilities (DODD) engaged the National
Association of State Directors of Developmental Disabilities Services (NASDDDS) to conduct an
environmental scan of the use and management of waiting lists in a sampling of states, and make
recommendations based on those findings regarding Ohios waiting list statute, rule and system. DDS
requested the review specifically include the following states: Pennsylvania; New Jersey; Minnesota;
Michigan; and, North Carolina. NASDDDS in consultation with Ohio DODD selected an additional twelve
states to include in the review: Massachusetts; Washington; Connecticut; New York; Colorado; Virginia;
Illinois; Utah; Texas; Louisiana; Alabama; and, MD.

NASDDDS prepared an eighteen-question survey to solicit information to address the six primary
elements to be queried:

1. Eligibility requirements to be placed on waiting lists;

2. Definitions of how need is defined;

3. Order of enrollment onto a waiver including use of priority categories;

4. Determination of type of waiver to offer if more than one waiver is available is available in a state;

5. Circumstances under which an individual can be removed from a waiting list; and,

6. Due process when someone is placed on or removed from a waiting list.i

The survey was sent to the seventeen (17) states on or about October 21, 2016 using Survey Gizmo. As
of December 1, 2016, twelve (12) states responded to the survey or 71% including: Pennsylvania; New
Jersey; Illinois; New York; New Jersey; Michigan; Minnesota; North Carolina; Connecticut; Colorado;
Washington; and Maryland. One state, New York, reported that it did not maintain waiting lists and
therefor did not provide a response to the survey. Michigan reported that it maintained a waiting list
only for its childrens waiver, and did not have a waiting list for adults with ID/DD.

The author included information obtained through independent research regarding the use and
management of waiting list for Missouri and Oklahoma. Massachusetts responded through a follow-up
phone call and has been included in the final report. Additional information was obtained from Ohio
officials during a phone call held on January 4, 2017. The findings presented in this report represent
information obtained from documents, phone calls and survey responses from fourteen (14) states.

1
Kaiser Foundation Report on Waiting Lists for HCBS Services 2014

pg. 2 Final Report March 06, 2017

Results
1. Eligibility requirements to be placed on waiting lists

All states reported or include in state documents that prior to placement on a waiting list the person is
first determined to be eligible for state ID/DD services. Seven (7) of the fourteen (14) states further
determine Medicaid eligibility, seven (8) states determine eligibility for the HCBS waiver program(s) and
one additional state determines potential eligibility for the HCBS waiver program(s), prior to placement
on a waiting list for services.

Based on available information, eight (8) states limit placement on the waiting list to a time-period
within which services are expected to be needed. Three (3) states limit placement on the waiting list to
those persons who will need services within 12 months, one state limits placement to target groups (e.g.
emergency, transitioning youth, and current need), one state limits access to need for services based
on health and safety needs between 90 days and 24 months, and three (3) states limit placement to
those who will need services within 6 months to 5 years.

2. Definitions of how need is defined

This element is closely related to whether states establish priority categories within the waiting list to
distinguish and urgency of need. All states included in this report establish basic information regarding
a persons specific circumstances as it pertains to his or her current living situation and/or life stage.
Eight (8) states complete a specific assessment of either the persons specific needs or identify the
services the person likely will need. Information regarding potential need is either collected during initial
intake and placement on the waiting list, or, by the case manager assigned to the person after ID/DD
eligibility is determined. Twelve (12) states report that case management services are available to
persons on the waiting list to assist people with accessing generic, state or local funded, Medicaid
and/or other government funded supports (e.g. Vocational Rehabilitation).

3. Order of enrollment onto a waiver including use of priority categories

All states in this report provide for an emergency category or definition to supersede any other order
of enrollment. One state (MA) defines its Priority 1 category in a manner that would be considered an
emergency: an immediate need based on health and safety criteria for residential or intensive supports.
In four states, what would constitute an emergency is in effect the first priority group to gain entrance
to the waiver program(s), and in one state (MO) only people considered to be in emergency status can
gain access to the states comprehensive waiver (e.g. waiver that provides out-of- home and extensive
supports). In the remaining eight states (8), the emergency category is in addition to a set of priority
groups or order of admission to HCBS waiver services.

The most common factors considered to constitute an emergency for people on a waiting list and the
number of states that utilize the emergency factor is detailed in Table 1 below:

pg. 3 Final Report March 06, 2017

Table 1: Emergency Factors for Waiting List Prioritization

Emergency Situation Number of States

Caregiver can no longer provide support (e.g. 11

death, nursing home admission, incapacitation)

Homeless or inappropriate housing (e.g. prison, 9

shelter)

Significant danger or harm to self or others 9

Subject to abuse, neglect or exploitation 6

Significant risk to health and safety of the person 6

Prevent imminent placement in an ICF/IID 4

Plan to leave institutional placement 2

Prevent out-of-placement of a child 1

Beyond an emergency, priority for enrollment varies across the states included in this report. As
illustrated below in Table 2, most states utilize more than one priority categorization group to organize
those persons who are waiting for services, and to determine order of enrollment. All prioritization
groups unless otherwise noted rely on situational characteristics such as status of the caregiver, health
and safety of the person or others and/or loss of living arrangement.

Table 2: Priority Categorizations used for Waiting Lists

State Priority Categorizations Additional Order of Number of People

in Order of Importance Enrollment Factors Waiting

MN 1. Immediate Need 1. Institutional Exit1 122

2. Defined Need 2. Reserved Capacity

3. Future Need

(must need services

within 12 months)
WA 1. Current waiver 106 children; 509
participant needs total

pg. 4 Final Report March 06, 2017

 Services in different
waiver.

2. Second priority:
priority population
identified by legislature;
immediate risk of ICF/IID
placement due to unmet
health and safety needs;
currently receiving state
only funds; on a waiver
that exceeds needs.

3. Third priority: persons

in need of waiver
services available in the
basic plus or IFS waivers
to maintain status in the
family or own home.
MD 1. Crisis Resolution 1. Length of time on 1,791 children;
waiting list or in some 7,612 total
2. Crisis Prevention cases the age of the
caregiver.
3.Current Request
2. Day services only:
4. Transitioning Youth; the time since exit
Knott Class; from high school or
Inappropriate date of application,
Institutionalization2 whichever is greater.
PA 1. Emergency 1. Date of application 3,083 children;
2. Reserved capacity 13,455 total; 2,099
2. Critical Need: within 2 autism waiver
years.

3. Planning for Need:

needs within 2-5 years.
CT 1. Emergency 1. Date of application 54 children; 825
2. Availability of waiver total
2. Priority 1: need slot in waiver that will
services within 1 year. meet needs.

3. Priority 2: need 3. Legislative target

services within 2 or population.
more years (Planning
list)

pg. 5 Final Report March 06, 2017

 4. Priority 3 (Planning
List)
NC 1) Emergency 2) First Approximately
come first served 3,300 children;
10,000 total
CO 1) Emergency 1) First come first 2,684 adults
served or date of 14th
2) Reserved Capacity birthday if eligible prior
to age 14.
3) Legislative criteria for
appropriations 2) Reserved capacity
3
KY 1) Emergency

2) Urgent

3) Future Planning
NH3 1) Priority 1: current or
need within 1 year.

2) Priority 2: need within

1-2 years.

3) Priority 3: need exists

now to within 2 years
but do not place person
at imminent risk
VA 1) Priority 1: Immediate Waiver slot assignment 5,716 children;
jeopardy. committee based on 11,016 total
needs of person and
2) Priority 2: may need risk factors.
services within 1-5 years
to meet health and
safety needs.

3) Priority 3: may need

services in 5 years or
more.
NJ 1) Priority List
2) General Waiting List
1) Emergency 229 children waiting
for when they reach
2) First come first serve adult status; 3,191
total

ILL 1) Emergency Length of time and 5,855 children;

randomness 18,795 total

pg. 6 Final Report March 06, 2017

 2) Critical Need: within 2
years.

3) Planning for Need:

need within 2-5 years.
OK 1) Emergency First come first served 7,451

2) Legislative directed
groups

3) Children leaving
ICF/IID services
MA 1) Immediate/imminent Different reserved None
health and safety risk capacity groups for 3
(30-90 days) different waivers. One
2) Priority 2: planning for waiver for out of home
services in 18 24 residential.
months

MO 1) Priority based on 1) First come first In-home WL 124;

results of Prioritization served Residential 52
of Need results (tool
scores personal and 2) Access to
situational comprehensive waiver
characteristics) only by meeting
emergency criteria.
OH 1) Emergency 1) Emergency.

2) Refinancing of 2) Maximization of
supported living and federal funding.
family support services.
3) Mix of individuals in
3) Refinancing of adult each priority category.
services.
4) Living arrangement
4) Aging caregiver or factors if applicable.
intensive needs.
5) First come first
5) Resident of an ICF/IID. served.

6) Resident of a nursing
home.
1
Minnesota has an active Olmstead action in place.
2
Persons in these categories must also be in one of the first three priority groups.
3
Kentucky and New Hampshire are included in this portion of the report only.

pg. 7 Final Report March 06, 2017

These results align with the results of the 2002 report prepared by the Research and Training Center on
Community Living Institute on Community Integration/UCEDD, University of Minnesota on waiting list
policies and resources. In that report, forty-seven (47) states responded to a survey regarding the
relative importance of factors used to determine access to services and supports among persons on
waiting lists. The authors concluded from those findings that the factors of immediate crisis,
emergencies, substantial concern for loss of present services were more important than length of time
of waiting, age of caregiver, or severity of disability. 2

4. Determination of type of waiver to offer if more than one waiver is available is

available in a state

Nine (9) states in the survey operate more than one waiver for HCBS services. Three states (NJ, ILL and
CT) maintain a single waiting list for access to HCBS services. Three states (WA, MA and MO) maintain
separate waiting lists for each waiver program in operation, and a person may only be on a single
waiting list. Two states (PA and CO) maintain separate waiting lists for each waiver program in operation
and a person may be on more than one waiting list at a time.

In all states, the state or local authority determines which waiver program is offered. This determination
is based on the identified need(s) of the person and whether the waiver program can meet the health
and safety needs accordingly. The determination of need is based on either a developed service plan or
a formal assessment of the individuals needs.

5. Circumstances under which an individual can be removed from a waiting list

All states report that people are removed from the waiting list for expected reasons such as death,
relocation out of state, request to be removed/no longer needs services, the person cannot be located,
and/or the person is determined to be ineligible for the HCBS waiver program. Two states, Virginia and
Oklahoma, remove a person from the waiting list if the person declines an offer of admission to a HCBS
waiver program. Four states, New Jersey, Missouri, Massachusetts and Connecticut, move people to a
lower priority group if the person declines an offer of admission to a HCBS waiver program.
Massachusetts moves the person to a lower priority after two refusals to accept enrollment, and
removes the person from all waiting lists for a period of one year if a person refuses a third time.

6. Due process when someone is placed on or removed from a waiting list

Due process rights are typically aligned with eligibility criteria to be placed on the waiting list in the first
instance. If the state evaluates a person for eligibility for a HCBS waiver program prior to placement on a
waiting list, that state provides Medicaid due process notice upon placement on the waiting list and
upon removal. If the state only determines eligibility for the state I/DD services prior to placement on
the waiting list, then the appeal process is managed by the local or state authority that manages the
ID/DD service delivery system.

2
Policies and Resources Related to Waiting Lists of Persons with Mental Retardation (sic) and Related
Developmental Disabilities (2002). Minneapolis: University of Minnesota, Research and Training Center
on Community Living, Institute on Community Integration. Page 6

pg. 8 Final Report March 06, 2017

7. When there is no waiting list in a state, how is demand for waiver funded services
managed

Demand for services in states with no waiting list is projected based on historical utilization of services
and demand. Many states actively identify youth in transition to anticipate the number of people who
will be exiting educational services and may seek services as an adult from the state I/DD service system
such as employment supports and day habilitation. Allocation of waiver slots is managed depending on
the states administrative structure (e.g. local, regional or state management of services), and
monitored by the state office to ensure that slots are available where needed.

Methods to determine the amount of waiver services to be accessed varies depending on the approved
waiver program. Waiver programs with specific financial limits, or capped waivers, typically permit
services based on the service plan up to the limit. Some states approve the service plan and proposed
budget or service types, duration and amount in advance of authorizing the person to begin services.
The NASDDDS survey did not sufficiently explore this question and will need further investigation
depending on the specific areas of inquiry sought by the OHIO DODD.

Ohios Use and Management of a Waiting List for HCBS services

Ohio operates four (4) HCBS waiver programs, the SELF waiver, the Level 1 waiver, the Individual
Options waiver and the Transitions waiver. Ohios County Boards of Developmental Disabilities (CBDD)
manage access to Ohios developmental disability services offered through the HCBS waiver programs as
required by Ohio Revised Code 5126.042. The Ohio Department of Developmental Disabilities waiting
list rule (OAC 5123:2-1-08) requires CBDDs to establish waiting lists when individuals request either
HCBS or non-Medicaid programs or services and available resources are not sufficient to meet the needs
of all individuals making requests. Individuals on the waiting list may be currently enrolled in a HCBS
waiver program and be waiting for a type of service or amount of service found in a different HCBS
waiver.

Ohio maintains one waiting list for all HCBS waiver programs by statute and rule, but individual lists are
maintained at the County Board level for each County Board respectively. The initial date of entry on the
waiting list at any County Board established the individuals place on the waiting list regardless if the
person moves to another County.

Ohio CBDDs also provide locally (County) funded services to individuals with intellectual and
developmental disabilities of all ages. These services may include, but are not limited to, respite, day
services and transportation.

Eligibility Requirements for Placement on the Waiting List

Ohio County Boards for Developmental Disabilities determine eligibility for DODD services and
coordinates the delivery of services and supports. If the person requests HCBS services and resources
are not currently available, the individual is placed on a waiting list for those services. According to Ohio
DODD officials, County Boards are not required to determine a persons eligibility for DODD services
prior to placement on the waiting list. Medicaid eligibility is not necessarily determined prior to
placement on the waiting list, and HCBS waiver eligibility is not determined prior to placement on the

pg. 9 Final Report March 06, 2017

waiting list. There are also no time restrictions on when a person may need such services (e.g. within the
next year, five years) to be placed on a waiting list, and, individuals can register to wait for one or
multiple waivers at the same time.

The waiting list rule indicates the County Board should determine the individuals immediate needs
and assist with obtaining alternative services to meet those needs. The waiting list rule is silent
regarding whether an individual must have immediate needs to be placed on a waiting list for HCBS
services. In fact, DODD officials confirm that individuals are placed on the waiting list for the purpose of
getting in line for potential future needs. The February 2014 report on the waiting list prepared for
the Ohio Developmental Disabilities Council confirms this, finding that 47% of those individuals and
families surveyed reported no current areas of unmet needs for services. 3 On an annual basis, the
County Board is to review everyones status, reassess service needs and provide the individual with an
update on his/her position on the waiting list. Ohio also permits an individual to refuse an offer of
enrollment in one of the HCBS waiver programs and retain his or her original spot on the waiting list,
designated by the date of application or entrance on the waiting list.

Discussion:

Unlike the fourteen states included in the environmental scan of waiting list policies and practices, Ohio
does not require eligibility for DODD services be established prior to placing an individual on a waiting
list for DODD HCBS services. There is also a practice of families placing a young child on the waiting list,
either based on guidance received from the CBDD or knowledge of the size of the waiting list obtained
from other sources, to simply register a placement date for a possible future need for services in some
unknown time in the future. This contributes to the size of the waiting list without revealing the true
nature of the number of individuals who may be eligible for DODD services now or in the future. As a
result, the waiting list on a statewide basis is not useful for the purposes of policy or budget planning.

Priority Categories

Ohio, like most states, has priority categories in place to guide the order in which people receive HCBS
waiver services with an emergency status that always receives first priority. The priority system is
defined and discussed below:

Emergency status: an individual is facing a situation that creates for the individual a risk of substantial
self-harm or harm to others is action is not taken within 30 calendar days. Emergency status may result
from, but is not limited to:

a. Loss of present residence for any reason;

b. Loss of present caretaker for any reason, including serious illness of the caretaker, change in
the caretakers status, or inability of the caretaker to perform effectively for the individual;
c. Abuse, neglect, or exploitation of the individual;
d. Health and safety conditions that pose a serious risk to the individual or others of immediate
harm and death; or

3
What are We Waiting For? Waiver Supported Services Needed by Individuals and their Caregivers (2014). A
Report Prepared by the Ohio Colleges of Medicine Government Resource Center for the Ohio Developmental
Disabilities Council. Page 14.

pg. 10 Final Report March 06, 2017

 e. Change in emotional or physical condition of the individual that necessitates substantial
accommodation that cannot be reasonably provided by the existing caretaker.

If there are available waiver openings with no current person in an emergency status, then the County
Board is to give priority with persons on the waiting list to meet the following needs of the system, or, to
those whose individual or caregiver status meets one of the following:

1) Refinancing of supported living and family support services for individuals 18 years of age or
older and who receive supported living or family support services;
2) Refinancing of adult services for an individual living in their own or family home and receives
adult services directly from the county board or from another provider with funding from the
county board;
3) Aging caregiver or intensive needs. An individual who meets either of the following
requirements:
a. Has a primary caregiver who is sixty years of age or older; or
b. The individual has at least one of the following service needs that is unusual in scope or
intensity:
i. Severe behavioral problems for which a behavioral support strategy is needed;
ii. A mental health diagnosis for which medication has been prescribed;
iii. A medical condition that leaves the individual dependent upon life-support medical
technology;
iv. A condition affecting multiple body systems for which a combination of specialized
medical, psychological, educational, or habilitation services is needed; or
v. A condition the county board determines is comparable in severity to any condition
described above that places the individual at significant risk of institutionalization.
4) Resident of an ICF/IID;
5) Resident of a nursing facility.

Discussion:

Ohios definition of what would constitute an emergency is in line with all states that responded to the
NASDDDS survey except for 1.e. The example noted in 1. e. above would be very difficult to evaluate
consistently, especially between different County Boards. In evaluating these criteria when establishing
an emergency status, it is critical that the risk to the person or others for imminent harm be evaluated
directly, rather than simply the accommodation that might be required by the caretaker.

According to Ohio statute and rule, beyond an emergency status, the Priority Categories carry equal
weight. This would in effect mean that Ohio has only two prioritization categories, emergency and those
outlined above which are considered equally. Given the size of the Ohio waiting list this does not
provide data that may be needed for forecasting future needs of the larger population. There is also
then a large segment of those on the waiting list that do not meet either of the priority categories
identified in the Ohio statute and waiting list rule. It is assumed that those individuals then are served
on a first come first served basis when HCBS waiver slots are available and no other individuals in the
priority categories are waiting in a County.

The use of age of the primary caregiver as a single factor in this priority grouping also creates a large
group of people that are otherwise not distinguished by specific support needs or situational
circumstances. Only three states that responded to the survey, Maryland, Illinois and New Jersey, used

pg. 11 Final Report March 06, 2017

the age of the caregiver as a primary factor to place a person in a waiting list priority category. Maryland
uses Crisis Resolution as its emergency status, and Crisis Prevention as its first priority group. Crisis
prevention requires that the person shall have been determined by MD DDA to have an urgent need
for services and shall be at substantial risk for meeting the criteria placing the person in a Crisis
Resolution status within one year, or, have a caregiver who is 65 years or older.

New Jerseys baseline entrance requirement for entrance on the waiting list is generally that the
caregiver is 55 years or older, and collects additional information regarding the ability of the caregiver to
provide support and individual characteristics. New Jersey follows a first come first serve policy to access
HCBS services after emergency status. Illinois considers age of caregiver of sixty years and older for in-
home support services only and where the person is not in crisis as a first priority group.

The remainder of the states either did not consider age of the caregiver, or, considered it as part of a
multipart assessment and algorithm to determine priority status. In states where age of the caregiver
was not considered, caregiver status was evaluated by the loss of a caregiver or the diminished capacity
of the caregiver to provide support that threatened the individuals health and safety.

Order of Enrollment

Ohio specifies further guidance regarding order of enrollment within the priority categories in cases
where two or more individuals share a priority status. Those criteria are:

1) The maximization of federal funding;

2) A mix among the individuals in each of the priority categories described above; and,
3) With regard to living arrangements, promoting:
a. Individuals ability to choose other individuals with priority as described above with whom
to live if the individuals have an existing relationship; and
b. Sharing of services among any individuals with priority as described above when the
services are appropriate for the individuals.

Lastly, when there are still individuals considered to have equal rank after taking into consideration
these factors, then, the order of the date of entry on the waiting list is utilized.

Discussion:

The order of enrollment guidance would suggest that the first two priority groups concerning
refinancing of services funded through state or local funding would be granted the highest priority. But
the language in the rule also states that the order of enrollment guidance is to be used within priority
categories, so it is not clear if the order of enrollment guidance applies to the priority categories as a
group or if those categories must still be considered as equal.

The second order of enrollment guidance, a mix among of individuals in each priority category, is also
insufficient when there are eighty-eight (88) different County Boards interpreting and implementing the
waiting list. A mix can be interpreted in any number of ways: age of caregiver; age of person needing
supports; intensity of needs; types of services that might meet those needs; in-home or out-of-home

pg. 12 Final Report March 06, 2017

service needs, etc. This type of guidance does not lend itself to transparency or consistency in the
administration of the waiting list within a county or state-wide.

How Need is Defined

Ohio requires that the County Board identifies the individuals immediate needs and assist the individual
in identifying and obtaining alternative services available to meet those needs when placed on a waiting
list. The waiting list rule is silent regarding how this is determined. DODD officials confirm that many
individuals are registered for the waiting list at a young age who do not need current services, and
individuals can be placed on the waiting list without proceeding through the intake and eligibility
process.

The County Board also provides case management services, but this is not provided universally
according to Ohio officials. Children and adults are least likely to receive individual assessments of need
or case management services as most needs are met by the family and school services. As youth exit
the school system, the CBDDs are increasingly engaged as individuals and families seek day, vocational
and employment services. These services can be provided either through locally funded County Board
services or through the HCBS waiver programs.

Ohio does not utilize a standardize assessment tool to determine support needs of individuals waiting
for services or for individuals enrolled in the different HCBS waiver programs. Ohio also does not
employ a consistent person-centered planning tool across the state. This will make it difficult to
establish a methodology to determine individual support needs or to collect such data for the state at
large.

Discussion:

If Ohio chooses to refine the prioritization categories to enhance the evaluation of the individuals
natural supports and situational characteristics beyond the age of the caregiver, then DODD should
consider also using an assessment or questionnaire that would be paired with the individual functional
assessment for all individuals who seek inclusion on the waiting list. This would enhance the ability to
evaluate the intensity and urgency of a persons service needs relative to situational characteristics that
could also be quantified for further transparency and consistency.

Determination of What Type of Waiver to Offer

Ohio currently reserves capacity in its waivers for a waiting list reduction initiative to increase the
number of planned (non-emergency) enrollments in the HCBS waiver programs as a supplemental effort
to reduce the waiting list. This does not replace regular waiver enrollment plans implemented by the
county boards. Ohio is also using 100% state funded waiver slots to support a Developmental Center
downsizing initiative, exits from private ICF/IID settings and diversions from admission to private ICF/IID
settings serving nine or more people. There are also a select number of state-funded waiver slots

pg. 13 Final Report March 06, 2017

reserved for individuals who are interested in shared living as part of the waiting list reduction initiative
in FY 2017.4

While the waiting list rule is not as clear regarding order of enrollment, recent communication found on
DODDs web-site explaining its waiting list initiatives provide more insight regarding how the mix of
individuals in the different priority groups is operationalized. State-funded waiver slots are targeted for
people leaving ICF/IID settings and for diversion purposes. County boards may also allocate waiver slots
for those who choose to leave an ICF/IID setting or to those who may seek admission to an ICF/IID
setting should the state-funded slots no longer be available.

The county board makes the determination regarding which type of waiver should be offered to an
individual through locally funded waiver slots, and for the state funded waiting list reduction initiative
waiver slots. Broad guidance suggest that the individual should be offered the SELF waiver prior to the
IO waiver if it meets the individuals needs and both options are available. The SELF and Level 1 waivers
require an assessment to ensure that the persons health and safety needs will be met for admission to
those waiver programs. Ohio officials report there is not specific guidance or requirements to be met for
entrance into the IO waiver exclusively if there are no other options available to the county board, but,
operationally county boards seek to enroll people in the waiver program that will most appropriately
meet the individuals needs but no more.

Once admitted to a waiver program, Ohio utilizes an assessment tool, the Ohio Developmental
Disabilities Profile, to assign an individual a funding category only for the IO (comprehensive supports)
waiver. The tool is completed with the individual and the support team, and is to consider:

1) The natural supports available to the individual;

2) The individuals living arrangement;
3) The individuals behavioral support and medical assistance needs;
4) The individuals mobility;
5) The individuals ability for self-care; and
6) Any other variable that significantly impacts the individuals needs as determined by the
department through statistical analysis.

Discussion:

The CBDDs are responsible to assign admission to the waiver that best meets the individuals immediate
needs and no more. Ohio has a tool in use that utilizes individual and situational characteristics to
assign funding categories for the IO waiver that could possibly be used in advance of offering enrollment
to any waiver program to assist in and/or standardize the decision regarding which waiver program to
offer to an individual.

4
Ohio Department of Developmental Disabilities presentation, Waiver Expansion Over the Next Two
Years, Lori Horvath and Marc Kleiman, accessed on December 01, 2016 at
http://dodd.ohio.gov/IndividualFamilies/ServiceFunding/Documents/Waiver%20Enrollment%20Webina
r.pdf

pg. 14 Final Report March 06, 2017

Circumstances When a Person Can be Removed from the Waiting List and Due Process
The Ohio waiting list rule indicates a person should be removed from the waiting list if at any time the
person is determined to not be eligible for home and community-based services. Since a determination
of eligibility for DODD services is not required for entrance to the waiting list, an assessment of eligibility
for HCBS waiver services likely only occurs when an individual is offered enrollment in the HCBS waiver
program and completes the application and Level of Care determination. Due process rights are
afforded in such circumstances, both Medicaid and an informal process if adopted by the County Board.
One would assume additional reasons would be upon notice of death; by the request of the person; if
the person moved out of state; and/or if the person was enrolled in a waiver program that met his/her
needs. This is not specified in the rule.

Ohio specifically permits a person to remain on the waiting list if they are offered and decline an
opportunity to enroll in a HCBS waiver program with the same original entrance date. Again, it would be
assumed that such an individual would not be considered an emergency priority category, but could
be in one of the other priority categories and remain so without consequence.

Recommendations for Ohio DODD to Improve the Operation of the Waiting List
1. Ohio should consider determining eligibility for DODD services prior to registering an individual
on the waiting list for HCBS waiver services. For children, eligibility should be re-evaluated at
age intervals as recommended by clinical standards to determine continued eligibility.
2. Given the size of waiting list, Ohio should consider limiting entrance to the waiting list to only
those who will need services within a certain number of years (e.g. within 1, 2 and 5 years). This
will assist DODD in more effectively planning for service growth and more accurately reflect the
number of people in Ohio who truly have a current or imminent service need.
3. Consider utilizing a standardized questionnaire/assessment and scoring methodology to refine
the priority category aging caregiver or intensive needs into more than one priority category.
This will ensure transparency and consistency in the application of priority determinations.
Expand characteristics to be considered beyond the age of the caregiver, such as the age of the
individual, the individuals support needs, the health of the caregiver, other individuals in the
household in need of support by the caregiver(s), and other available natural supports. Ohio
utilizes the Ohio DDP to establish funding ranges once an individual is enrolled in the IO HCBS
waiver. This tool would be a good starting point for such a tool to refine and standardize
assignment to priority categories. See the tools utilized by Massachusetts, Connecticut,
Missouri and Virginia as examples attached to this report.
4. At minimum, improve the amount of information that is consistently maintained regarding
individuals who are on the waiting list and shared with DODD. At minimum, the following
information should be collected: age; standardized assessment results if available; living
arrangement; caregiver circumstances; current support services if applicable; HCBS waiver
enrollment if applicable.
5. Consider aligning the waiting list assessment process with specific guidance regarding which
HCBS waiver an individual would be offered, either through reserved capacity or entrance
requirement definitions in the respective HCBS waiver programs. This would also add to the
transparency and consistency within and across county boards, and, significantly enhance data
analysis and forecasting for HCBS waiver management.

pg. 15 Final Report March 06, 2017

 6. Improve clarity in the rule regarding order of enrollment as it relates to choosing a mix of
individuals in each priority group. The order of enrollment should be reconsidered overall if
Ohio changes and/or refines the current priority groups and methods to determine assignment
to a group.
7. Add additional specific reasons an individual can be removed from the waiting list to the rule.
Consider a refusal to accept an offer of HCBS services as a reason to lower an individuals rank or
priority status on the waiting list. States that move people off of their waiting lists each year
employ this policy as it becomes another indication of true urgency of need.

The primary purpose of a waiting list for HCBS services should be to establish as accurately and
transparently as possible those individuals who are in urgent need for services to allocate state
resources effectively to meet the health and safety needs of its citizens. Maintaining an expanded
waiting list for HCBS services to include those individuals who anticipate the need for HCBS services in
the future should be time limited to be practical and useful for planning and budgeting purposes, and
include the sufficient information regarding individual and caregiver characteristics to both be predictive
of service needs and eventual urgency of need.

The current size of the Ohio DODD waiting list as it is currently structured and defined can create a
sense of hopelessness to those who are looking ahead to when they will need services, and drive other
families and individuals to register for the waiting list regardless of service need now or in the
foreseeable future. Interviews with representatives from several CBDDs indicated that people are in
fact receiving critical services when the needs arise, and emergencies are addressed. The 2014 report
prepared for the Ohio Developmental Disabilities Council reported that of those surveyed, 46% had no
current unmet need and an additional 33% had one unmet need. Of those with current unmet needs,
something to do during the day, help with daily activities and transportation represented the vast
majority of requested services.5 Those types of services can be addressed through a mix county funded,
Medicaid and HCBS services, which would support the reports from CBDD representatives that most
individuals are having their primary needs met. While this does not represent all eighty-eight county
boards, it does paint a different picture than the one where over 40,000 people are waiting for services.
Ohio DODDs constituents would be better served if the waiting list statute and rules were revised to
create a system that was more informative and reflective of current need and demand for services as
discussed in this report.

i
The Survey Tool is attached

5
What are We Waiting For? Waiver Supported Services Needed by Individuals and their Caregivers (2014). A
Report Prepared by the Ohio Colleges of Medicine Government Resource Center for the Ohio Developmental
Disabilities Council. Page 15.

pg. 16 Final Report March 06, 2017