KEY WORDS: self-directed support, habilitative support, Consolidated Supports and Services, a support broker, independent decision-making, empowerment.
ABSTRACT: The paper presents an overview of the recent New York innovation, supported on different levels, to provide self-directed supports for people with intellectual and developmental disabilities. An open debate of pros and cons of such supports is provided.

Choice and traditional habilitative supports

For individuals experiencing intellectual and developmental disabilities, the ability to make choices can be reduced by the services and programs that are meant to provide support.  This is especially worrisome because it is by making choices that we learn and help determine our life course. New York State has many traditional habilitative services including day habilitation, residential habilitation, and community habilitation.  All of them are developed to be person-centered and have individual plans or services tailored to fit the needs of a particular person.  Habilitation plans are meant to outline the support a person needs, the goals s/he wants to achieve, and how a staff member can support this person to accomplish the goals. However, even with individualized plans in place, traditional habilitative services often severely restrict choices and this happens due to many factors – the time when such services start, the place where support is provided, the staff person responsible for the support, and who else might be present while the support is provided.  Moreover and perhaps of the greater concern, depending on the power dynamics between the staff person and the individual receiving support, many additional choices may be also limited including, what a person’s money is spent on, what s/he prefers to eat and what kind of radio/TV programs s/he favors, when s/he goes to the bathroom, and even what this person does at any given moment throughout the day.

Putting myself in the shoes of a person receiving traditional habilitative services, I can only imagine that I would feel trapped, having little choice to make real and meaningful individual decisions throughout the day.

CSS, an option to self-directed supports

Fortunately for individuals experiencing intellectual and developmental disabilities who want more control and choice than traditional habilitative supports could offer, New York State has developed a service called Consolidated Supports and Services (CSS) that is based on many of the principles of self-direction.  CSS has been around in one form or another since the 1990s, but until recently it has always been a service that was available only to those knowing where to look for it.  Half a year ago, the situation changed dramatically, and now all people with intellectual and developmental disabilities looking for new services in New York State are referred to CSS and can make the determination if they would like to self-direct their supports.

In general terms, CSS is a mechanism whereby New York State allots a person with an intellectual or developmental disability an individualized budget based on the person’s ability to be independent and manage his/her behavioral and physical healthcare needs.  New York State currently assesses each person’s ability and needs using a profile. The more support a person needs to stay independent, manage his/her behavioral and physical healthcare needs, the greater the funding allotment New York State provides.  

The key to CSS being a self-directed service is that once a person with an intellectual or developmental disability receives a CSS budget allotment, s/he is the one with the authority to choose how the budget is marshaled out and spent. Generally speaking, a person with the disability is able to decide what services s/he wants to purchase. It is clear that being in direct control of one’ own funding and having the authority to choose how to distribute the money is extremely empowering. 

Details of CSS

Like other habilitative services in New York State, CSS is funded through Medicaid.  This means that the source of funding is split between federal, state, and local governments (50% federal, 25% state, 25% local). Funding CSS through Medicaid is an effective way of maximizing the distribution of the expenses, which is important as annual allocations can range between $20,000 and $175,000 per person.  Being funded through Medicaid also means that CSS services are extremely regulated.  Medicaid requires that services be documented, tied to outcomes, and that funding be spent on approved expenses.  Consequently, supports have been built into CSS to ensure that a person with an intellectual or developmental disability is able to meet the significant regulatory and documentation requirements of administering the funding allotment.   

Although the anticipated funding available to a particular person is known before CSS begins, a plan and budget must be submitted and approved by New York State before supports can be implemented.   The CSS plan is an extremely detailed document that outlines what capabilities a person has, what supports they need and who will be responsible for meeting these needs.  Additionally, the plan must supply a budget that breaks down each expense into allowable and regulated categories. Categories for budgeted expenses are quite diverse and can include:  hiring self-directed staff, clinical support, transportation, a housing subsidy, traditional habilitative services, and other than personal services (such as program supplies, telephone expenses, adult education, gym, advertising, etc.).

When developing a CSS plan and budget to submit for approval, many people work with a person called a support broker.  A support broker is a staff person that has been trained and approved by New York State as having the expertise to help a person with an intellectual or developmental disability develop and implement a CSS plan and budget. The person can interview many different support brokers to assist him/her. The person may decide that s/he would like to minimize the support broker’s role and may rely on other natural supports such as family and friends to develop and implement the CSS service. On the other hand, if a person finds a support broker s/he likes, then the person can budget for the support broker to act as his/her proxy and complete the CSS plan and budget, recruit, train, and schedule staff, and complete Medicaid service documentation.

In order to access the CSS funding, the person must also hire a Financial Management Service (FMS) provider agency.  The FMS agency is also regulated and trained by New York State. The FMS is able to process CSS service documentation, and bill Medicaid as outlined in the approved CSS budget.   Being the Medicaid biller, the FMS agency becomes an important partner as they are responsible for hiring staff and distributing the funding as approved in the CSS budget and as directed by the individual with an intellectual or developmental disability.

An example of CSS in action

Matt is a young man diagnosed with Down syndrome who has earlier received traditional habilitative supports.  Matt was living in a group home with several other people with intellectual and developmental disabilities, but was not happy with the amount of time that he had to spend in the community and by himself.  He also wanted to have a place to live that he could call his own. While strong advocates for Matt, his parents live several states away and are not able to provide any direct support.

Matt and his family sought out CSS to empower Matt and develop supports that were specific to his needs and goals. Matt was given a budget allotment by New York State, at which time he and his family chose a support broker to help them develop a plan and budget.  Over several planning sessions, Matt’s support broker helped pull together a circle of support, which included Matt, his family and friends, and some staff members who were working with Matt.  Matt’s support circle explored the question of what was needed to provide help to Matt. Led by the support broker, Matt chose to jointly develop a plan that would address each of his needs. Together, they determined a list of staff that would be hired with Matt’s CSS budget allotment; also together they defined and delegated some of management duties to specific members of Matt’s circle of support.  By going through all the duties and responsibilities in great detail it became clear that Matt needed some extra help. Matt decided that he wanted his parents to help him budget his money and pay his bills.  Matt also decided he wanted to keep employing a support broker to help him manage his staff and complete Medicaid documentation.  Matt interviewed and chose a nonprofit agency to provide FMS as well.

Matt and his circle of support decided that he would rent his own apartment and hire a staff person to live with him.  The staff person would not have any housing expenses to live in Matt’s apartment and would be paid hourly for several hours per day.  Matt determined to have a staff member available in the morning and evening to help him make meals and assist with household chores (grocery shopping, laundry, and banking). Matt and his circle of support also decided to hire a separate staff person to be available on weekends for recreational outings like going to museums, concerts, and cultural events.  Matt and his circle budgeted money to reimburse Matt’s staff to drive him in case Matt wanted to attend events outside of his local community. They also budgeted any other activities that Matt’s staff had to pay for while working with Matt (museum passes, concert tickets, etc.).  Additionally, Matt and his circle of support hired a nurse to meet with Matt weekly and help him schedule doctor’s appointments, follow doctor’s orders, and fill up Matt’s medication dispenser so he could take his medications as independently as possible.

Matt’s Annual CSS Budget:

Staff salary and benefits:  $38,000
Nursing: $2,400
Support broker: $2,800
Rent: $9,600
Transportation: $2,800
Other than personal services:  $2,500
FMS: $10,200
Total Expenses: $68,300

Once Matt’s CSS plan and budget were approved, Matt worked with his FMS and support broker to recruit, screen, and hire staff.  After several interviews Matt decided on a staff person to live with and another staff person to work with him on the weekends.  Matt’s FMS agency formally hired the staff after getting the approval from Matt and completing the New York State required background checks.  The FMS also helped train Matt’s staff on the documentation and guidelines they would need to complete in order for the FMS to bill Medicaid.  Matt and his support broker also started looking for apartments to rent and supplies to furnish the apartment.  Once all the staff were hired and an apartment rented and furnished, Matt stopped receiving traditional habilitative services.  Matt moved out of the group home and never looked back.

Matt and his circle of support continue to meet every three months to catch up and evaluate how Matt is doing. Everyone wants Matt to be successful and ensure the CSS service is meeting his need.  At these meetings Matt gives an update about how he thinks things are going.  Matt’s FMS gives an update on how much of Matt’s budget remains and how much has been spent.  Matt is able to reallocate the budget that has already been approved. If Matt wants to make significant changes involving the increase of his overall CSS plan and budget, New York State allows him to do so one time per year (unless there is an emergency in which case services can be modified immediately).   Since implementation not everything has gone exactly according to the CSS plan. Matt has had some staff turnover, but generally speaking Matt continues to be very happy with the option for self-directing his supports though the CSS.

Future trends and considerations

The overall move in New York State toward self-directed supports can be seen as a positive and empowering development for individuals experiencing intellectual and developmental disabilities.  Self-direction and empowerment continue to be important factors leading to the increase in CSS in New York State, however the increase can also be attributed to an overall move toward “managed care” services for individuals with intellectual and developmental disabilities.  Managed care involves accounting for and managing health related expenses on a person-by-person basis. CSS and the process of assessing each person’s needs individually and allocating resources accordingly, fits naturally with the managed care model.

Now that there are many new people requesting to self-direct their supports through CSS, many more service providers have started producing services like FMS and support brokers. A number of providers and staff are familiar with Medicaid guidelines and protect health and safety of individuals experiencing disabilities. However, many providers are often less familiar with the guidelines, regulations, and self-directed foundations of CSS.  Additionally, the individualized nature of CSS coupled with the amount of new people requesting the service has been overwhelming to some of the New York State employees who are charged with authorizing and approving CSS plans and budgets.

The influx of new people looking for CSS has also meant developing services that are unique and in some cases this has challenged existing providers and their systems. Limited guidance from New York State has compounded the problem. Providers continue to raise questions about staff hiring, compensation, salary tiers, unemployment claims, health benefits, incident reporting, and many other regulations.  CSS has also started changing the culture of service provision.  This has been a wakeup call for some long-term staff who must change their approach to providing support. Staff must learn to relinquish the control they held in their previous roles as decision-makers for individuals experiencing intellectual and developmental disabilities—now it is the person receiving services who is his/her own boss and who is the one making decisions.

Based on my own personal experience of CSS and self-directed supports, I can assure you that there will continue to be challenges that need our close attention.  Clear and consistent communication will need to be emphasized.   This is especially true given at times lack of direction from New York State and the fact that many new and inexperienced agencies started providing similar services. Communication is critical with people new to self-directing their supports.  Because of all these challenges, it could be easy to drop the ball, but because the ball is someone’s life, dropping the ball needs to be an informed process of shared risk and responsibility.  Making choices inherently means making mistakes. When we can learn, grow, find meaning in a mistake and in turn make informed choices we can become even happier in the future. The key now is to continue focusing on each person who wants to make a choice and work to develop supports that make such a choice possible.