A: There are a variety of residential options, depending on the level of care required by your daughter and on how much support she will need in order to live as independently as possible. Since we don’t have specific information about her, we are providing a brief description of the various possibilities. We’ll start with situations requiring the most care, and work toward those requiring the least.

The first is called an Intermediate Care Facility (ICF). It is considered intermediate because persons living there do not need to be in a skilled nursing facility, but neither are they independent enough to live in an IRA (see below). Persons living in ICFs generally require intensive medical, clinical, service coordination, nutritional, recreational, and day treatment services, all of which are provided within the ICF program.

The second option is an Individual Residential Alternative (IRA). Persons living in IRAs are able to be more independent than those living in ICFs, but still do not have the levels of self-sufficiency needed to live in apartments or houses on their own. They may be ambulatory or use wheelchairs or other mobility equipment, and they may also have medical or neurological conditions, and/or varying degrees of mental retardation. Persons living in IRAs attend Day Treatment programs, Day Habilitation programs, or they may have jobs in the community through Supported Employment. Services are individually tailored to meet each person’s needs and interests.

Next on the list are Supported Apartments. These are for persons who are able to be more independent with ADL and community skills, and do not require the same levels of 24 hour support as persons living in IRAs. Apartments are usually shared by two individuals whose skills complement each other, and part-time Residential Habilitation and staff oversight are provided. Individuals living in supported apartments usually work in the community through Supported Employment, or are involved in other community-based activities.

The last, and most independent, options are Section 8 and HUD apartments. These are government subsidized, income-adjusted apartments which are specifically modified and adapted for persons with disabilities. Persons choosing this option must be capable of independent living, or must have a personal care aide in place, as no support services are provided. Persons choosing this arrangement enter into a regular lease agreement with the landlord and are responsible for their own rent and maintenance. Daily activities are of their own choosing.

All of the above options are barrier-free. The group homes described usually are comprised of 4-8 residents who are carefully matched for service need and compatibility. Individuals may move on from one option to another if they acquire a higher level of independent self-care. Community supports and services are always utilized in assisting residents to attain their life goals. Service Coordination is available to all eligible persons, regardless of which living option they choose. As there are generally waitlists for all of these options, it is best to get started early. For ICFs, IRAs, and supported apartments, it is necessary to be on the New York State Cares List, which is a master list of eligible persons in need of residential placement.

Of course, persons may also live in their own homes with privately arranged personal care and residential habilitation supports. Some creative funding mechanisms may be available through NYS OMRDD to assist with this type of living.

If you have questions or would like more information about residential placement options, please call UCP Suffolk’s Service Coordination Office at 631-232-0011.

A: A Supplemental Needs Trust (SNT) is a useful and important legal tool for keeping a developmentally disabled loved one living in a dignified manner at home or in a residential alternative in their community, as well as for enhancing his/her life and care.

In 1993, a Federal law enabled eligible parties (parents, grandparents, or legal guardians) to establish SNTs for the benefit of disabled persons under age 65. The person may have been born with a developmental disability (mental retardation or cerebral palsy, for example), and settlement monies may have been received from a medical malpractice or personal injury lawsuit. Or, an inheritance may even be the source of the trust funds.

In a “third party” SNT, funds which originate from someone other than the disabled person can be used to supplement the government entitlements such as SSI and Medicaid which provide for the person’s care. A beneficiary must be designated to receive the funds after the person’s death. The beneficiary can be a family member or members, and/or a charitable organization.

In a “pay back” trust, monies earned or received by the person with the disability are used. The beneficiary of this kind of trust must be Medicaid, which looks to recoup monies expended for medical care it funded during the disabled person’s lifetime.

The biggest advantage to a SNT, regardless of the type, is that the SNT funds are exempted from costly medical expenses the person with the disability may incur over his or her lifetime. The SNT funds can be used instead to pay for additional care which may not be funded by Medicaid, or for other services or activities that will enhance the life of the individual. The monies in the SNT do not have to be “spent down” to reach usual Medicaid eligibility levels.

To answer the second part of your question, SNTs are not made available by UCP. They need to be established via the legal system by a competent attorney who specializes in trust law. The attorney can make sure the language of the trust meets the legal requirements, the objectives of the person establishing the SNT, and the needs of the person it is being established to assist.

A: Environmental modifications (e-mods) would be the answer. These are defined as any changes to the physical design of a person’s home or work area that make it easier for that person to move around and do things more independently. E-mods might also make it easier for the person’s caregiver to assist, particularly if there is lifting involved in that person’s care. Some examples of common e-mods are wheelchair ramps, widened doorways, stair climbers, an assortment of lifts, roll-in showers with special shower chairs, and cabinets and sinks with heights adjusted for convenient use by someone in a wheelchair. Many housing/residential alternatives(such as Section 8 or NYS certified group homes) come with these modifications already in place, but most private homes are not designed with a person with a disability in mind and may have to be changed at some point. E-mods should be done by a contractor who is knowledgeable about them, and they can be costly. However, some of our local Long Island townships have ramp programs available for eligible residents, and some e-mods can be approved as a service through the Home & Community Based Services Medicaid Waiver. Another source of e-mod funding for eligible persons is through OMRDD’s Family Support Service grant. For renters, portable temporary ramps are available, and other more permanent modifications may be made with the permission of the landlord. If you would like more information about e-mods, please call the UCP Suffolk Service Coordination office at (631)232-0011.

A: Risk is defined in Webster’s Dictionary as a dangerous element or factor; something that creates a hazard; or the possibility of loss, injury, or disadvantage. Choice is defined as the right, privilege, opportunity, or freedom to pick out that which is favored or superior. In our disabilities service environment, we have to be concerned with Risk Management: a reasonable balance of both risk and choice. Overprotecting people is disrespectful of their right to choose, limits their growth and development as individuals, and impairs their human dignity. However, while choice is an important value in our society and in our service environment, there are other equally important values requiring our attention, such as preventing people from engaging in activities that may endanger their health and safety, or the health and safety of another person. It is an important part of our role to pay attention to the preferences and choices of the people we serve while carefully considering their decision making abilities with regard to evaluating risk. When someone’s choice is simply a matter of personal taste or opinion, that choice is respected. When we see the individual headed for disappointment or embarrassment because of the choice, then our job is to bring this possibility to his/her attention, provide alternatives, and then allow the person to choose with the dignity of risk. All of us have made decisions in our lives which were impulsive or which did not turn out as we’d hoped; we analyze our mistakes, learn from our experiences, and that’s how we grow. However, when the choice places the person (or someone else) at definite risk of harm, that’s when our actions must be proactive, protective, and preventive. UCP Suffolk supports and maintains a person-centered environment, supported by risk management, in which a person’s right to choose is respected while paying careful attention to keeping people safe. If you would like more information about this subject, please contact the UCP Suffolk Service Coordination Office at 232-0011.

A: HCBS stands for Home and Community Based Services. The Waiver refers to New York State’s flexible funding system that allows for the use of Medicaid monies to make certain services available to people with developmental disabilities who are deemed eligible. It “waives” certain Medicaid rules so that Medicaid dollars can be creatively “reprogrammed” to support a wider range of community alternatives to assist people in living their lives with the greatest amount of independence and satisfaction. New York obtained the HCBS Waiver in 1991, and is currently the largest Waiver provider in the country, with approximately 38,000 enrollees statewide. California is the second largest Waiver provider, and Florida is third. Enrollees must maintain their Waiver status by means of an annual re-determination and by keeping their Medicaid current.

Waiver services are designed as stand-alone services in that they are not linked to other programs or services. Each agency providing a Waiver service bills Medicaid separately for each Waiver service provided. This separation of services supports enrollee choice from a menu of options. Enrollees can choose one service from Agency A and another from Agency B. Some examples of HCBS Waiver services are Residential Habilitation, Day Habilitation, Prevocational Habilitation, Supported Employment, Respite, Environmental Modifications, and Plan of Care Support Services.

Most of the Waiver services described above are available at or through UCP Suffolk. Waiver enrollees are required to receive Medicaid Service Coordination (MSC) for a minimum of three months, but most retain this service on a long-term basis.

If you would like additional information about HCBS Waiver services and eligibility, please contact the UCP Service Coordination office at 232-0011.

A: Yes! UCP has something available for consumers and their families who need a break called “Respite”. There are different types of respite, including in-home respite, and overnight respite. Both programs are available to families residing in Suffolk County who have an individual with a developmental disability living in their home. In-home respite is a program wherein a respite worker is assigned to a family, or the family recruits their own worker. The respite takes place in the home of the family during the daytime, evening or week-end hours. Overnight respite enables families to leave their family member who has a developmental disability in a facility staffed to meet the needs of the individual. The time frame generally ranges from a single night to one week, in some cases, up to two weeks. The cost of both respite services is covered by a Family Support Grant from OMRDD, with some of the cost assumed by the family. This is a frequently utilized service which is provided by many different agencies in Suffolk County. Because people are becoming more aware of the existence of respite, and because respite grants have funding limits, it can be difficult at times to secure the service. Families are advised to place their name on as many agency waiting lists as possible, and to maintain regular contact with these agencies on a periodic basis. It is critical to plan ahead when a specific time for respite is needed, as last-minute opportunities are rarely available. For more detailed information about respite, you can contact Jane Kay, UCP Respite Coordinator, at 232-0011, extension 415.

A: Formerly known as case management, service coordination is a process of information, linkage, and referral designed to assist people with disabilities in building lives of their own choosing. A service coordinator can provide you with information about and assistance in accessing a variety of services, including Medicaid and other benefits, residential opportunities, day programs, employment assistance, social/recreational opportunities, in-home assistance, respite, transportation, medical care, home modifications, and adaptive technology. Once desired services or supports are in place, the service coordinator can help you monitor those services for ongoing satisfaction or to make any necessary changes. The service coordinator can act as an advocate and a source of support as you work to achieve your personal goals. (We call these “valued outcomes”.) The service coordinator will visit with you in person at least once monthly, and will maintain the individualized service plan (ISP) that you develop together.

To be eligible to receive service coordination, you must have documentation of a developmental disability acquired before the age of 22, or a traumatic brain injury acquired after the age of 22. You must also have Medicaid, as this is how service coordination is funded. However, if you donot have Medicaid, but do have a developmental disability, you can still receive service coordination at UCP Suffolk on a short-term basis through a special non-Medicaid grant.

If you would like to know more about service coordination at UCP Suffolk, please call us at (631) 232-0011, extension 550 or 486.

A: Guardianship is a legal relationship. The essential purpose of it is to provide a substitute for a person’s legal authority to make decisions in his or her own self-interest, when that individual does not have adequate natural capacity to make such decisions. Guardians are typically appointed for minors (children under the age of 18, referred to as “infants” in the guardianship laws). Guardians are also appointed for persons over the age of 18 who are mentally retarded or developmentally disabled, and who are unable, because of their disability, to manage themselves or their affairs. Guardianship matters are handled by the Surrogate’s Court, which may appoint a guardian of the person, or of the property, or both. Attorneys specializing in disability law are recommended to handle guardianship matters, but are not required. Guardianship can assure parents that someone will personally advocate for the best interests of their disabled child when they (the parents) can no longer do so. If you would like more general information about guardianship, or if you need a list of guardianship resources, call the UCP Service Coordination office at 232-0011.