Understanding How the Department of Developmental Disabilities System Works

In order to make residential plans for a family member with a disability, parents should understand the system of available benefits and supports. The services available through government programs vary depending upon each program’s eligibility requirements. Many individuals with an intellectual or developmental disability (IDD) will be eligible for services from the Department of Intellectual and Developmental Disabilities. Those who are not may be eligible for other services for people with disabilities or mental illness.

The system of support for people with disabilities has undergone many changes over the last few decades. These changes reflect the need to protect the rights of individuals who have a disability and to provide better supports. The improvements in the system have come about through years of advocacy by parents, families, and people with disabilities. However, the system continues to struggle with some issues, and change is ongoing.

Historical perspective

Residential services for people with IDD are still relatively new. Residential training schools were developed in the United States during the beginning of the 20th century. The purpose of the schools was to “cure” people with intellectual disabilities, which professionals believed could be done with proper training. When the schools were unable to cure ID, they became custodial living centers, were often overcrowded, and provided poor treatment. The disillusionment with residential treatment resulted in the establishment of advocacy groups such as the Association of Retarded Citizens (Now called The Arc) in the 1950s. Court decisions and legislation enacted in the 1960s helped ensure the rights of people with disabilities and improve the support services provided to them.

Many federal and state laws address treatment of and services for people with disabilities. Federal laws such as the Americans with Disabilities Act (ADA) and the Rehabilitation Act primarily protect people with disabilities from discrimination. The Fair Housing Act specifically protects people from discrimination based on their disability in housing matters. The Individuals with Disabilities Education Act (IDEA) requires public schools to make available to all eligible children with disabilities a free and appropriate public education. Many other laws appropriate money in order to provide services. Supreme Court decisions have led to the closing of some large institutions and the protection of civil rights for people with disabilities. These laws and decisions have articulated some basic principles underlying services offered to people with intellectual and developmental disabilities today.

Rights of People Who Have Developmental Disabilities

An important step in the protection of rights for people with developmental disabilities came in 1975 with the enactment of the Developmentally Disabled Assistance and Bill of Rights statutes. In addition to other provisions, Congress established the rights of people who have developmental disabilities. These rights set the standard for how residential supports and other services are provided to people in the IDD system.

The Rights of People Who Have Intellectual and Developmental Disabilities are:

1. The right to be treated at all times with courtesy, respect, and full recognition of their dignity and individuality
2. The right to an appropriate, safe, and sanitary living environment that complies with local, state, and federal standards
3. The right to food adequate to meet accepted standards of nutrition
4. The right to practice the religion of their choice or to abstain from the practice of religion
5. The right to timely access to appropriate medical or dental treatment
6. The right of access to necessary ancillary services including, but not limited to, occupational therapy, physical therapy, speech therapy, and behavior modification and other psychological services
7. The right to receive appropriate care and treatment in the least intrusive manner
8. The right to privacy, including both periods of privacy and places of privacy
9. The right to communicate freely with persons of their choice in any reasonable manner
10. The right to ownership and use of personal possessions so as to maintain individuality and personal dignity
11. The right to social interaction with members of either sex
12. The right of access to opportunities that enable individuals to develop their full human potential
13. The right to pursue vocational opportunities that will promote and enhance economic independence
14. The right to be treated equally as citizens under the law
15. The right to be free from emotional, psychological, and physical abuse
16. The right to participate in appropriate programs of education, training, social development and habilitation, and programs of reasonable recreation
17. The right to participate in decisions that affect their lives
18. The right to select a parent or advocate to act on their behalf
19. The right to manage their personal financial affairs, based upon individual ability to do so
20. The right to confidential treatment of all information in their personal and medical records
21. The right to voice grievances and recommend changes in policies and services without restraint, interference, coercion, discrimination, or reprisal
22. The right to be free from unnecessary chemical or physical restraints
23. The right to participate in the political process
24. The right to refuse to participate in medical, psychological, or other research experiments.

Entitlement vs. Available Services

The IDEA (Individuals with Disabilities Education Act) mandates a free and appropriate public education for every child. For adults, federal regulations are designed to protect civil rights and guard against discrimination. However, services such as vocational and residential supports are not entitlements. Public funding is allocated for these services, but many services (i.e. Medicaid Home and Community-Based Services Waivers) are accessible only to a limited number of people, based on available funding, and there can be long waiting lists. A few basic benefits (SSI and Medicaid healthcare benefits, for example) are entitlements and must be available to all individuals who qualify. Most entitlements are administered by individual states, and the nature of the benefits can vary.

The Institutional Bias in Funding

The system of funding for long-term care, including Medicaid, had traditionally had an institutional bias. A person who needed certain services, nursing care, or 24-hour support, for example, would have to move to an institution because Medicaid paid only for services in a licensed facility. This meant that individuals who were able to live in the community with supports had to pay for the supports themselves. This focus has changed completely with the goal now being to support individuals in the least restrictive setting. The Department of Health and Human Services launched the Community Living Initiative in 2009 to develop and implement innovative strategies to increase opportunities for people with disabilities to “enjoy meaningful community living.” In 2014 The Centers for Medicare and Medicaid Services (CMS) issued a final rule to ensure that the Medicaid programs provide “full access to the benefits of community living and offer services in the most integrated settings.”

The Link between Housing and Support Services

In the past the IDD system typically “bundled” housing with support services. Support services were offered in state institutions, intermediate care facilities, or group homes. Housing was included in the cost of care in these facilities. Therefore, the level or type of support a person needed would dictate the person’s housing. The result was fewer choices as to where and with whom to live.

The philosophy that people with disabilities have the right to decide where and with whom they live has allowed people to choose housing based on their personal preferences. Support services are now offered in a variety of settings. Supported Living funds and Medicaid Waivers will pay for support services, but not housing and living expenses. The disadvantage is that individuals are responsible for covering housing costs themselves. The advantage is that individuals have more choice about where to live.

Supported Living

An important step in the development of residential services is Supported Living — both a philosophy and a service-delivery system. In the State of Ohio, funds had been set aside for Supported Living services. In the Supported Living model of support, a person with a disability resides in the home of his or her choosing, and supports are provided according to an individualized plan, based on the person’s abilities and needs. As a philosophy, Supported Living influences how supports are provided to a person with a disability in any setting. These are some fundamental principles underlying Supported Living:

• Planning starts with a person, and plans are designed around the person, as opposed to designing a service and fitting a person into it.
• There are no predetermined criteria to indicate when a person is ready to live in the community.
• Supports are flexible and based on a person’s individual schedule and preferences.
• People should live in a place of their choosing and with people with whom they choose to live (or alone if they prefer).
• People should own (or lease) their own home and choose who provides support services.

The person centered planning focus of supported living have been adapted in all settings and funding streams.

Self-Determination

Another evolving philosophy in the IDD field is self-determination. Like Supported Living, self-determination is both a philosophy and a process. As a philosophy, it embraces four basic principles:

• Freedom – People with disabilities have the same rights as any other citizen to choose where they want to live, with whom they want to live, and how they will occupy their time.
• Authority – People with disabilities should have control over the sums of money needed for their support.
• Support – Rather than receiving only “supervision” and “staffing,” people with disabilities may seek companionship for support and contract for any number of discrete tasks for which they need assistance.
• Responsibility – Responsibility includes the wise use of public dollars as an investment in a person’s life. The goal is to allow people to contribute to their community in meaningful ways.

As a process, self-determination includes the use of service brokers or fiscal intermediaries to assist in budgeting for supports. Individuals and the people in their circle of support decide how allotted resources will be spent to best meet their needs.

In 1997 the Robert Wood Johnson Foundation funded demonstration activities around the country to explore how people with developmental disabilities can influence the supports they receive through increased self-determination. The Final Impact Assessment Report for this initiative indicates that the process of self-determination is evolving. A person thought to be living a “self-determined life” in one state may not be thought of the same way in another state. Even after a national effort to promote self-determination, disparity in the control people with IDD have over their supports remains.

How Services are Delivered

The task of providing services is left to individual states. Each state passes laws and appropriates funding for services. This means that each state system is different. Some states manage the system directly, while other states delegate many management tasks to each county.  States also have different funding systems.

How the IDD System Works in Ohio

The Ohio Department of Developmental Disabilities (DODD) oversees the services and supports provided to people with developmental disabilities throughout the state. The governor appoints a state director. Each county has a board of DD that directly manages the services provided in that county. The county system is managed by a superintendent.

Medicaid Redesign

In the past, Ohio has not taken full advantage of the opportunity to increase funding by leveraging local tax dollars to receive federal funds through Medicaid. Except for ICF/MR funding, most residential services were paid for solely by state taxes. House Bills 94 and 405 increased the funding base for residential services by using state money as a match for federal funds through the Home and Community Based Services (HCBS) Waivers. The state applies to the Center for Medicaid and Medicare Services (CMS) for approval of an HCBS Waiver plan. When CMS approves the plan, the state will allocate Waiver “slots” to each county according to the availability of funds. The state funds the Waivers with a 40/60 match from Medicaid. That is, for every dollar the state spends, Medicaid adds $1.50.

In addition to making more money available so that more people can receive services, HCBS Waivers offer several other advantages for individuals and their families. The Medicaid system has some strict rules about consumer choice. A person who receives a Waiver is able to choose a home, housemates, and support services. The Waiver will also “follow” the person. So rather than funding a “bed” in a group home, the Waiver will provide funding for an individual to live where he or she chooses. The person can move if he or she desires without losing the funding for support staff. With Medicaid Waivers, the state and counties also have to follow some other additional regulations.

As of 2015 there are three developmental disabilities HCBS Waivers available.

• Level One Waiver
• Individual Options (IO) Waiver
• Transition Waiver
• Self Empowered Life Funding (SELF) Waiver

Each Waiver covers a variety of services and has specific eligibility requirements and funding limits. In order to apply for a waiver you need to contact your local County Board of Developmental Disabilities. There are waiting lists for the waivers so it is important to complete the application process and get on the waiting list before services are needed. There is a wealth of information, including a handbook for each type of waiver, available on the DODD website at https://doddportal.dodd.ohio.gov/INF/WaiverSer/Pages/default.aspx.

Improvements in Health and Safety

Ohio has worked to improve the quality of life for people with developmental disabilities by ensuring their health and safety. Some of the initiatives in this area include:

• A system for quality assurance reviews;
• Improved investigation of alleged incidents of abuse and neglect;
• The abuser registry, which prevents people convicted of abuse from working in a direct support-service position anywhere in the state;
• A system for reporting, reviewing, and tracking all unusual incident reports to monitor for trends and patterns that might indicate a need for further inquiry about an individual or provider
• Strict rules for the certification and closer monitoring of service providers.

Residential Waiting List Rules

When an individual requests residential services with the county DD board, his or her name goes on a waiting list until funding for services becomes available. These lists have been notoriously long, with some people remaining on the list for ten or more years. The waiting lists are administered by each county according to state regulations:

• When an individual requests residential services and is determined to be eligible, his or her name will go on the waiting list as of the date of the request.
• Any request for residential services is a request. So it is not necessary to be on a list for each type of waiver.
• The county has to inform the person (or guardian) in writing when he or she is placed on the waiting list and the official date of placement.
• Each year, the county must notify the person (or the guardian) of his or her status on the waiting list. The county must also make the person aware of any available services, including those not operated or funded by the Department of DD.
• When the person reaches the top of the list and is offered an available service, he or she has the right to decline that service. If the individual does so, he or she remains at the top of the list and must continue to be offered services as they become available until one that is appropriate is found. A person cannot be placed on the bottom of the list because he or she has declined services.

Service and Support Administration (formerly known as Case Management):

Previously, every person receiving services from the DD system in Ohio had a case manager assigned by the county board of DD. The case manager would oversee the services and assist in linking to other needed services. It is now generally accepted that a person is not a “case” that needs to be “managed.” The term has been changed to service coordinator, or service and support administrator. With this change in title comes a change in focus.

Service and support administration is a function of the  county board of DD. Service and support administrator (SSA) is a certified position with educational requirements including a bachelor’s degree. The primary function of the support administrator is to oversee all of the support services that an individual is receiving and assure that they are integrated. This person will also approve the individual’s budget. Every person who receives services will have a support administrator, regardless of the funding source for the services. The function of the support administrator will be performed by the QIDP (Qualified Intellectual Disabilities Professional) for anyone living in an ICF/DD facility.

Another role mandated by House Bill 94 is the individual advocate. This role is not as well-defined as the service and support administrator. There are no specific requirements as to who performs this role except that the advocate is chosen by the person receiving services. It can be a family member or friend. The individual advocate is not a publicly paid position but an integral part of a person’s support network. This person can help to oversee the services and assist the person receiving supports to the extend needed.

How the Process of Receiving Services Works

An individual applies for services at the county DD board where he or she lives. This is typically done through an intake office.

Eligibility criteria are based on an assessment called the OEDI (Ohio Eligibility Determination Instrument). The COEDI is a version of this assessment used for children.

To be eligible for DD services in Ohio, an adult must have a developmental disability, defined as a severe, chronic disability characterized by the following:

• It is attributable to a mental or physical impairment or combination of impairments, other than impairments solely caused by mental illness.
• It is manifested before the age of 22.
• It is likely to continue indefinitely.
• It results in one of the following:
  1. In a child under age three, at least one developmental delay or an established risk
  2. In a child at least age three but under age six, at least two developmental delays or an established risk
  3. In a child age six or older or an adult, a substantial functional limitation in at least three of the following areas of major life activity, as appropriate for his or her age: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and, if the person is at least age sixteen, capacity for economic self-sufficiency.
• It causes the person to need a combination of special, interdisciplinary, or other type of care, treatment, or provision of services over an extended period of time, individually planned and coordinated for the person.

If a person is eligible for services, the county board will assign a service and support administrator. The SSA will work with the individual and the family or circle of support to develop a service plan that will meet needs based on available funding. The service plan will consider the person’s natural supports in the family and community, as well as his or her needs and preferences.

Once needed supports are identified, funding is targeted to pay for the support services. This will often necessitate being placed on a waiting list for services, especially when residential supports are needed. The county board will attempt to address emergency health and safety needs immediately, but the nature and extent of these services will depend on the availability of funding. For example, if an individual’s primary caregiver is no longer able to provide support, the SSA will look for other natural supports (i.e. another relative with whom the individual can live). If no natural supports are available, the SSA might look for a temporary solution (i.e. emergency respite in a facility). The emergency solution may not be the preferred solution, but it may last for a significant time, depending on the waiting list.

The process of applying to receive funding may depend on the services being requested. As of 2015, most residential support services are funded with Medicaid Waivers. A brief summary of the process for Waivers follows:

• The person applies for Medicaid through the Department of Job and Family Services. Parents can expedite this process by applying very early and by making certain there is nothing to prevent their child from qualifying.
• The county DD board will complete a Level of Care assessment to determine eligibility for Medicaid-funded services. A person has to meet an ICF/DD level of care in order to qualify for services funded through the Waiver. This level indicates that the person needs assistance in certain areas, such as activities of daily living.
• The Ohio Developmental Disabilities Profile (ODDP) is then completed. The information is used to calculate the individual budget for services. The budget is based on the level of service needed. Other factors such as geographical location are considered as well.
• If an individual is eligible to receive a Medicaid Waiver, he must sign a Freedom of Choice Form. This form indicates that the individual (or guardian) understands he or she has a right to choose whether to accept Medicaid services and a right to choose a service provider.
• Once an individual budget is calculated, an Individual Service Plan (ISP) is written and coordinated by the service and support administrator. Anyone chosen by the person receiving services or his or her guardian can be involved in the process. The ISP will specify what supports are needed and who will provide these supports.
• At this point, the individual and his or her family will work with the SSA to choose a service provider. Most people will choose a provider agency rather than hiring their own employees. Service providers are certified by the state based on standards defined in the Medicaid plan. The county DD boards will maintain a pool of providers certified under the state-mandated statutes. The counties cannot dictate their own standards for inclusion in the provider pool.
• When the ISP is completed and signed, parents and child can coordinate the start date for services with the SSA and the provider.

When services are initiated, the service and support administrator will coordinate the services. The families would go to this administrator first to address concerns about the quality of services that cannot be worked out with the provider. Services are also monitored by quality assurance reviews, health and safety reviews, and surveys by the Center for Medicare and Medicaid Services (CMS).
When receiving Medicaid Waiver services, each person must undergo an annual redetermination. Once the redetermination is completed, the ISP is reviewed by the individual and his or her support network, and the SSA makes any changes needed in the plan. Changes can be made in the ISP if needed during the year by having the SSA complete an addendum.

Hints for navigating the bureaucracy

Phone Calls

• Keep a log of phone calls, including the date, who initiated the phone call, and a summary of what was said.
• Always get the name of the person with whom you speak and a phone number or email address where the individual can be reached.
• If a call is not returned in two to three days, call again.
• Before getting into an explanation or asking questions, ask whether the person has a few minutes to talk. In addition to saving time and repetition, it indicates the person is giving you undivided attention.
• Phone calls can effectively address minor or routine issues. With a complex problem requiring significant time or negotiation, it is better to set up a face-to-face meeting.
• Sometimes management and county board staff will respond more quickly to email, which also records the contact.

Documents and Information

• Unless required, never give original copies of documents. To provide original documentation, make a copy for yourself, and make sure that the agency will return the original document.
• Keep copies of everything that you give to agencies (i.e. applications, letters, etc.). Keep copies of all correspondence sent and received.
• When asked to supply additional documentation or information, get it to the person or agency as quickly as possible. If a report or application makes its way your “to do” pile, it can easily be forgotten.
• Make written correspondence brief and to the point.

Meetings and Appointments

• Bring the minutes or plans from the previous meeting for reference.
• At the beginning of meetings, introduce yourself to anyone you do not know and ask what his or her position is.
• Take notes at meetings. Don’t be afraid to ask a person to slow down or repeat what is said. If someone is reading from a report, asking for a copy may be easier than taking notes.
• Review the decisions at the end of the meeting to make certain that you understand what is going to be done and who is doing each thing.
• If you have difficulty taking notes and keeping up with the conversation at the same time, ask a friend or family member to sit in on the meeting and take notes for you.
• Organize and write down questions for meetings and appointments with professionals. For a lot of questions, it may be best to schedule additional time (i.e. with doctors who are very busy). It may also help to mention to a doctor or therapist at the beginning of an appointment that you have some questions.
• Don’t sign anything unless you understand and agree.

Dealing With (or Preventing) Conflicts

• Know who has the authority to make a change, butalways work your way through the chain of command first.
• If you do not understand something, ask again untilyou do.
• When in doubt, ask for a second opinion.
• Be positive. Avoid being pessimistic or critical.
• When negotiating for an addition or change toservices, explain clearly what your concern is and how you would like itto be addressed. Prior to a meetingor conversation, gather information to support the request. Organize the information in a logicalway that will not take up a great deal of time in a meeting.
• Do not start out making a request by asking ayes-or-no question. This will limitthe options, and the answer might be “no.” Instead, ask what can be done to address the concern. The team can discuss possiblealternatives and may come up with a more creative option, or come aroundto the option you prefer.

When the team has agreed to change a service plan or to implement a new intervention strategy, make sure that the agreement is in writing.