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Frequently Asked Questions:
Increasingly, families are permitted to select the program provider of their choice. Your government service agency (such as a Department of Developmental Services) and assigned Case Manager may suggest agencies which have special qualifications and therefore, merit your consideration. For example, Community Systems, Inc. (CSI) is acknowledged to work well with individuals who have challenging behaviors, helping them over time to gain self-control and an enhanced quality of life. CSI is also acknowledged for its willingness and ability to support individuals with intensive physical disabilities. It is also possible that your government service agency will organize a "vendor fair" or "provider fair" at which you will have the opportunity to meet many provider organizations simultaneously, including CSI. If you have preliminary interest in us and prospective funding has been identified for your loved one, your assigned Case Manager will help you to explore CSI, visit a possible home (or apartment), meet staff and prospective housemates, and even arrange an overnight visit by your family member before making a final choice on CSI. Each of the four CSIs ( Connecticut, Delaware, Massachusetts, and Virginia) has developed individually to have special strengths and interests, so please explore the CSI in your region.
Increasingly, families and the person to be supported are offered personal choices, but circumstances may vary. If a small home (for no more than four persons) is being newly created, there is an ideal opportunity to find compatible housemates. If your son is being offered an opening in an already established home, you may have to face compromise, unless you wish to remain on a waiting list for possible future openings. If you elect to move forward with a less than ideal residential placement, CSI will assist you to make a preferred match as soon as financially and logistically feasible, which may require your son moving again to another home. It may take several months, or even much longer, to accomplish a change.
The state-of-the-best practice is changing about desired living environments for persons with disabilities. First, group homes have become smaller and smaller. If CSI were to open a new group home, it would have at most two, three, or four housemates. Second, living in an apartment has become for some an attractive option, because it helps to promote community integration, particularly in newer apartment complexes having fitness facilities, pools, and other amenities. Persons receiving residential supports may have the opportunity to live in a small cluster of apartments, for example three two-bedroom apartments having joint 24 hour program supervision or, if reasonably independent, to live alone in their own apartment. Supervision of apartment living can range from intermittent (a few hours/week) to 24-hours/day, depending upon individual needs. Third, there is also "shared living," in which a qualified provider (who sometimes also has a family) shares a home with a person with disabilities.
Shared living is a term used to denote a person with disabilities living with a person (or family) in a private home or apartment. The home may be owned by the "provider," leased by CSI, or leased by the person supported. Most typically, one person (possibly two persons) with disabilities lives in the home with the provider. The provider is selected by CSI after a thorough background check and becomes a contractor to CSI. In turn, CSI is likely to have additional responsibilities providing a) respite staff in the home and b) structured day activities or supported employment approximately six hours/weekday. Remuneration for the provider is negotiated by CSI. Most often, the provider receives a monetary stipend and modified or waived rent for their services. If the person supported needs very little support, the shared living companion may simply receive free rent. Many people with disabilities prefer shared living to group home living, and CSI can point to many positive relationships and experiences among providers and persons supported. It is preferable for CSI or the person supported to control the housing so the person supported is not required to move in the event the shared living provider elects to terminate the relationship.
Yes, provided your family physician accepts Medicaid and practices within the same geographic region where your family member will live. We will be pleased to work with your family doctor, so long as he or she understands our information and documentation requirements and is willing to include us as a member of the healthcare team. Given the responsibility placed on CSI by the government agency which has engaged us to provide residential supports, we must be closely involved in coordinating medical care to your son. Most family physicians can understand and appreciate our need, provided we give them a written release of information at the beginning of the relationship. If it is not possible to remain with your family physician, CSI has a wealth of knowledge about other primary care physicians in the geographic regions in which we operate. We can make suggestions for primary care physicians and specialists.
CSI staff are trained to provide on-site first aid and CPR. Immediately, we will also coordinate the provision of emergency medical care via his primary care physician or 911 and the nearest hospital Emergency Room, whichever is most appropriate to the circumstances. Community Systems is well-experienced in meeting persons' medical needs, because one of our sub-specialties is supporting persons with intensive physical health needs. We support persons who have seizure disorders, chronic medical conditions, and persons who require adaptive equipment such as oxygen, feeding tubes, and other equipment. In the event of an emergency, we will accompany your son to the ER and continue to provide emotional support, health-related information to the hospital staff, and service coordination. If your son is admitted to the hospital, we will continue to provide support as warranted and permitted by the hospital staff. For example, if your son is non-verbal and behaviorally challenged, we will ask the hospital if it wishes us to provide supplemental staffing throughout the hospital stay. Finally, we will welcome your son home when he is well and ensure our staff provide continuity of care by following closely the hospital's discharge instructions.
7. I do not favor supported, independent living for my son. He will not be safe. Must I agree to it?
No, the choice ultimately is yours. However, we hope to speak with you at length and to introduce you to persons and families who first agreed to supported, independent living with great trepidation, but whose son or daughter has thrived since. If after those discussions you are still unable to agree, we can introduce you to other kinds of residential supports within CSIís range of offerings and/or introduce you to other provider organizations in the region which might offer an option more to your liking. In any event, we will assist you with your familyís problem-solving on this issue, whether or not you select us.
Yes, of course. The CSI-supported home or apartment into which she is moving will become HER home. She may have guests when she pleases with two caveats. If your daughter will share living space with others, we ask that you be considerate of persons' schedules (most of our folks have a regular work or day activity schedule on week-days). We also ask that you be mindful of our objectives, which are to coach persons to live life fully as an adult with as much independence as possible and we need time daily to work with your daughter on those objectives. In addition to visiting HER home, we hope you will invite your daughter to visit YOUR home for days, weekends, and holidays as well. If we can help to make a family visit possible by providing transportation (or perhaps meeting you half-way) or staffing, please ask us what help we can make available. Helping families to have close relationships with their loved one in our care is important to us.
One funding guideline is important to understand in the context of this answer. In inviting your daughter to your home, please remember that each state has certain program occupancy requirements (which differ state to state), and if your daughter visits you so often she fails to meet minimum time spent in her own home, her Medicaid support will be jeopardized. For example, she may not be able to visit you every weekend, but perhaps one weekend/month, if that is your mutual desire.
Several systems and management methods will be in place. First, your brother will have a detailed and personalized plan of care/support which will speak to his needs. The plan is written and revised quarterly by his interdisciplinary team (IDT). You may be a member of his IDT if you are his guardian, or in any event if he wishes you to be a part of his team. Second, we employ or contract with appropriately licensed persons, such as nurses, dieticians, and physical therapists, to contribute to and monitor his plan of care. Third, we provide our in-house staff with training which meets or exceeds the governmental standard of your state or region. (See additional answers re: training elsewhere in these FAQs). Fourth, we operate with detailed, written policies and procedures governing health and safety. Fifth, the majority of our homes must be licensed and undergo annual (or bi-annual in some circumstances) surveys and periodic unannounced visits by government surveyors. Finally, ensuring health and safety is our overriding concern, which is attentively overseen by our employees, executives, corporate officers, and Board of Directors.
10. How will my child have friends if she lives in her own apartment, rather than live with others like her in a group home?
Our experience confirms that your daughter is much more likely to develop friendships by living in other than a group home. If she lives in an apartment complex, she is likely to meet neighbors on either side, people at the pool or clubhouse, a fellow tenant who attends a neighborhood church and will introduce her to parishioners, and perhaps even find a part-time job within range of a local transit service. Your daughter will also have CSI staff support for an agreed number of hours daily, and one of staffís roles is to help facilitate expanding her circle of support.
The residential, case management, and/or employment supports received by a person with intellectual disabilities, via a government agency, are overseen by an IDT whose membership is tailored to the needs, interests, and services a person receives. The IDT always includes the government agency's Case Manager, the person receiving supports, his/her guardian, and his/her family if not also the guardian and he/she elects. The IDT will also include representatives of the principal providers (for example, the residential and supported employment providers) and may also include healthcare providers, behavioral support specialists, and other members of a person's circle of supports. Core members of the IDT will come to every meeting of the group. Other persons, such as healthcare providers, may come only when there is an issue bearing on their sub-specialty. The IDT meets routinely (say, quarterly) and can also meet on an urgent or emergency basis. Minutes of an IDT meeting are kept and if you, as a team member, are unable to attend a particular meeting, you may review the reports at your convenience.
12. My son can be very demanding, requiring much personal attention. What will you do when his nondisabled apartment mate leaves without notice, having not appreciated the demands of the arrangement when he agreed to it?
First, let us be clear that it is your sonís apartment, so in no way will he be displaced. Second, CSI will provide staff support seamlessly, however we need to accomplish that. In the short-term, staff may not live in, but be assigned shift to shift. Third, before finding a new, live in apartment mate, we may find it appropriate to re-assess your sonís needs and to change the nature of his supports on a go forward basis. But the bottom line is that your son will not be displaced from his favored living arrangement.
No, unless you are one of the few people who have contracted with us individually for services because your son was unable to qualify for state-supported services, or because you did not wish to wait for such supports to become available. If you are receiving services through your area government, your son's residential supports will be funded by four possible combination of means: 1) the Medicaid Waiver Program, which is a federal/state program which encourages community alternatives to institutional living for persons with developmental disabilities; 2) your state or local government's General Funds, which in some cases may supplement the Medicaid Waiver; 3) your son's Social Security or Social Security Disability Income; and/or 4) a portion of your son's employment income. The latter two sources may be used to fund in part "room/board", but a portion of such income must be given to your son monthly for his personal spending monies. While you may not have a financial obligation, you may elect to help your son furnish his bedroom and living areas, help to fund his vacations, help to buy him clothing (or other desired items), and generally you may spend a limited amount on his welfare so long as the amount given does not disqualify him from receiving Medicaid. Our staff can give you further guidance.
Each person supported has a Program/Medical Record which is a multi-volume record having a standardized format which contains financial, program, and medical documentation. Initial information in each person’s record is an Emergency Fact Sheet. It contains all the possible means of contacting a person's family members and/or guardian. Our staff know to look there for your contact information, and our staff know in which circumstances we are obligated to contact you as quickly as possible. Such circumstances include illness, injury, an unusual incident (for example, a vehicle accident), an unexplained absence, or a regional/national emergency. You will be asked to contact us if you leave the area for a vacation, or if you are otherwise unavailable. We will make every effort to seek you out.
Please raise your concerns to the Program Manager who will be responsible for management of the home. He/she may arrange an early meeting among your family and the staff in question and will do so upon your specific request. Every effort will be made to resolve the conflict, if one persists following discussion. Please appreciate that legitimate conflicts do sometimes arise between family and staff, for example, over how much independence a person supported can be given. The staff may promote a degree of independence which you think your adult child is incapable of mastering. If you are not quickly satisfied with mediation efforts of the Program Manager, please say so, and the assigned Program Director (a senior CSI executive responsible for a cluster of programs) or Executive Director will intervene. We strive for positive relationships with the families of persons we support, and we will make every effort to reach out to accommodate your concerns.
As involved as you wish to be, and we certainly will invite your participation in planning meetings. There is a pattern to service planning. Before someone moves to a CSI-supported home, a "transfer planning conference" (or transition meeting of a similar name) is held. During the meeting, you will have the opportunity to introduce us to your daughter, her strengths and needs, and before the meeting ends, a plan is developed for the first 30 days of residential support. Before the close of 30 days, a first year Annual Plan is developed by all members of the interdisciplinary team. Quarterly thereafter, the Annual Plan is reviewed and revised as necessary and appropriate. The cyclical planning moves forward on schedule, unless there is an emergency, at which point a member of your daughter's "Interdisciplinary Team" may summon the team for an emergency meeting. Issues which may constitute an emergency include, but are not limited to: a serious health crisis; refusal to participate in her residential or supported employment program; or a serious safety matter, such as bolting from her home unaccompanied (presuming she cannot do so safely). You will be advised of emergency meetings.
It is a formal planning methodology in the field of developmental disabilities which requires certain planning steps and philosophy. More broadly, the term has come to mean visionary planning which is uniquely fitted to the person with disabilities. It asks us to listen and respect the person's wishes and choices; to involve his or her circle of supporters including friends and family; to plan practically and concretely for the near and mid-term future by establishing measurable goals; and to invite the person to express his or her "vision" for the long-term future. The "vision" may include living in one's own home; having a personal relationship; owning and driving a car; and achieving the desires all of us have. It becomes the responsibility of the circle of supporters, including CSI, to help the person achieve his or her vision.
We advertise in area newspapers, on the internet, in professional newsletters, and invite our existing staff to identify candidates with shared personal values. We value the last approach (and therefore may provide our staff modest referral bonuses) because we seek persons who have strong personal interests and a personal commitment to persons with disabilities, as shown among our current staff. For example, we like to recruit persons who have personal interests to which they are devoted, such as music, sports, and travel, in the expectation that they will be willing to share those interests with the folks we support. We prefer employment candidates who have volunteered in settings which have given them the opportunity to work with people with disabilities—such as in therapeutic horseback riding or in hospitals. Many of our staff have prior employment experience in our or a related field. From among all applicants, we select the strongest candidates who are then screened much further. In all cases, candidates undergo a driving history check, a criminal history check, and a professional reference check. Persons also undergo a drug screen In Connecticut and Delaware, as mandated by state law. The interviewing process is intense and may involve persons to be supported having the opportunity to meet or interview candidates. When the findings of all background checks are assembled, the Executive Director is asked to give the candidate final consideration; only an Executive Director may offer employment with CSI.
First, there is a mandatory training guideline established by state and/or local government. In CT, DE, MA, and VA in which CSIs operate, first year mandatory training ranges from 90 to 96 hours. In turn, future year mandatory training ranges from 14 to 54 hours. Mandatory training includes health topics (e.g., CPR, first aid, medication administration, infection control), human rights, safety topics (e.g., fire protection, vehicle safety), and several topics related to enhancing the quality of persons' lives (e.g., use of community resources, communication). In addition, we tailor training to the needs of the persons staff will support. To illustrate, if one or more persons living in a home is non-verbal or perhaps utilizes adaptive equipment, our staff have special training (periodically refreshed) in how to best support them. If we are opening a new home, we go even further to establish a functional team before opening. We plan a three to four week pre-service training program for staff, held at the new home, asking family members to join us to train staff in the needs and preferences of their family member, among other elements of the program.
We welcome persons of all races, nationalities, and ethnicities into our programs. We, too, are diverse—that is, CSIs together employ staff from North/South America, Europe, Asia, and Africa, all of whom have prior educational or employment experiences in the United States. Among our organizations, several persons are Spanish-speaking and other foreign languages are represented in some CSIs. If we do not have a staff person who shares the newcomer's language, our staff will learn rudimentary elements of the person's language and become more adept with time.
Many of the persons we support are non-verbal, and we utilize a communication system known as "total communication." It encourages the mixing of all forms of communication, for example, gestures, eye movements, vocalizations, computer keyboards, signs, and manipulation of common objects (for example, a tiny toy car held forth may mean "let's go to town, now") to permit the user access to communication. In brief, we are inclusive, creative, and inventive when it comes to fostering communication with the diverse people we support.
22. What if my 25 year old son (with mild intellectual disabilities and challenging behaviors) is exploring topics and activities I would prefer he not, such as attending a church, getting a drivers license, and forming an intimate relationship?
These may be very difficult subjects to explore with parents, but we would ask you to appreciate your son's and our perspective. Our mission is ... helping people with disabilities to find happiness in their own homes, in their personal relationships, and as contributing members of their communities. Our dedication over the next several years will be to help your son enhance his life and achieve his dreams, those many of us share, such as having our own home. We will coach him continually in choice making, safety, and personal responsibility. His family and everyone having a vested interest in his life will have the opportunity at periodic IDT meetings to voice their opinions about the soundness of his choices and life direction. Given that your son's choices are made with reasonableness, we will advocate for his choices, consistent with our mission.
By several means. On a day-to-day basis, we ask and expect our management and administrative staff to be in the homes and apartments we support. No one is exempt from being "eyes on." For example, our business office staff may visit homes to review personal spending records for accuracy. Our corporate officers (who are housed in a small headquarters unit called the Division of Management and Support Services) travel state to state to visit homes and CSI administrative offices. Written progress reports are also required. For example, in-home Program Managers are asked to provide their supervisors monthly, written reports to confirm the achievement of quality benchmarks. Executive Directors, in turn, are asked to report on their program's status to the Board of Directors three or more times annually. Finally, there are quality assurance reviews conducted. Licensed homes are monitored on a regular basis by government personnel, in accordance with each state's regulations and contractual agreements. CSI employs an internal program evaluation system known as QUEST. QUEST assesses the quality of life, health, and safety experienced by the people we support. Cross-state teams of CSI employees review the accomplishments of their CSI colleagues to ensure a fresh eye is assessing program quality.
24. One of our concerns is having a responsible party to care for our daughter after our deaths. How can I ensure your organization will remain on the job? What if you aren't here?
We were founded in 1984 and have grown continually since. We anticipate our first generational change in executive leadership in 2010, but we have already introduced succession planning discussions in our Board of Directors meetings and have conceived a Management and Leadership Training Program to help prepare staff for the future. We have every confidence that Community Systems will be a long-standing organization. Having said that, you also have the extra security of having a local or state government involved in providing oversight to and financial resources for your daughter's care. In the unlikely event that CSI ceased operations, your government oversight agency would arrange for an alternative care provider.
25. I have recently heard the term "portability of funding." How does it apply to my son who lives in a CSI-supported group home?
Portability of funding is a relatively new principle. It does not yet have universal application among state and local government sponsors of services for people with intellectual disabilities. The principle holds that the funds which can be identified as having come with an individual (from an institution or entering the system from his or her family home) or which can be carved from his or her current residential support (leaving services for the remaining persons in the home viable) are his to "take" and use as he and you see fit. These funds would then be taken with the approval of DMR or like agency to purchase supports in another approved setting. In brief, portability of funding is a consumer-driven idea, somewhat like a school voucher, which permits your family to seek a more desirable option if you are not wholly satisfied with current services and supports and have been unable to negotiate desired improvements. In these circumstances, you and your son might seek to apply the funds toward different supports within CSI or from a different approved provider.
Alexander Graham Bell Association for Deaf and Hard of Hearing
AAIDD (American Association on Intellectual and Developmental Disabilities)
American Association for the Blind
American Association of the Deaf-Blind (AADB)
The Autism Society of America
The ARC of the United States
Brain Injury Association of America
Center for the Study and Advancement of Disability Policy (CSADP)
International Association for the Scientific Study of Intellectual Disabilities
National Association of Councils on Developmental Disabilities
National Association for Down Syndrome
National Association for the Dually Diagnosed
NAMI - National Alliance for the Mentally Ill
National Down Syndrome Society
National Federation of the Blind
Prader-Willi Syndrome Association
The National Leadership Consortium on Developmental Disabilities
The Connecticut Association of Nonprofits
Connecticut Community Providers Association (CCPA)
The Connecticut Council on Developmental Disabilities
Capitol Region Education Council (CREC)
Litchfield Arc (LARC)
Litchfield County Autism Spectrum Association, Inc.
New England Assistive Technology Marketplace (NEAT)
State of Connecticut, Office of Protection and Advocacy
State of Connecticut Web Site - Check licenses for practitioners
State of Connecticut, Department of Developmental Services
State of Connecticut, DDS Licensing Regulations
State of Connecticut, Telephone and Email Listings
The Arc of Delaware
Delaware Association of Residential Facilities (DelARF)
Delaware Developmental Disabilities Council
Delaware Department of Health and Social Services -
Division of Developmental Disabilities Services
Delaware Safety Council, Inc.
Down Syndrome Association of Delaware
Arc Massachusetts, Inc.
Cape Cod Disability Access Directory
Commonwealth of Massachusetts Disabled
Person Protection Commission (DPPC)
Governor's Commission on Mental Retardation
Massachusetts Commission for the Blind
Massachusetts Department of Mental Retardation (DMR)
Massachusetts Rehabilitation Commission (MRC)
Statewide Head Injury Program (SHIP)
Cape Organization for Rights of the Disabled (CORD)
The Arc of Northern Virginia
Arlington County Government
City of Alexandria Government
Fairfax County Government
Fairfax-Falls Church Community Services Board
Loudoun County Government
Prince William County Government
Virginia Department of Mental Health, Mental Retardation
and Substance Abuse Services
Brain Injury Services
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Therap Services, Inc: Online incident reporting and electronic record keeping
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