GAPS
Welcome to The Arc of Oregon’s GAPS Web page. The GAPS program exists to help ensure a high quality of life for individuals with developmental disabilities. GAPS provides guardianship, health care representation and advocacy. For more information, contact Elaine Friesen-Strang, The Arc of Oregon GAPS Director at 503-241-2755 or elaine.strang@arcoregon.org
What is GAPS?
Types of Services
Guardianship
Health Care Representation
Advocacy
Eligibility
The Referral Process
Program Structure
Funding/Fees
Stories
Volunteer Opportunities
Definitions
Links
Note: Click on underlined words for definitions. Each ORS statute and OAR rule listed is a link to the actual law. Click on the statute or rule number or to go to the State of Oregon Web site with more details.
What is GAPS?
How do you ensure the future quality of life for your child with a developmental disability? In the mid-1970s, a small group of Oregon parents asked this question about their children. As a result of their efforts, the GAPS program was established in 1978. Today the Guardianship, Advocacy and Planning Services (GAPS) Program serves over 100 adults in 15 counties throughout the state as guardian, health care representative and/or advocate. It also offers future planning and guardianship information. As a program of The Arc of Oregon, GAPS serves individuals with developmental disabilities and their families and caregivers throughout the state.
Types of Services
From its start, GAPS has provided services to Oregonians with developmental disabilities and their families. GAPS can provide:
- Guardianship
- Health Care Representation
- Advocacy
The need for assistance may be due to testamentary nominations (in a Last Will and Testament), medical treatment decisions, victimization, significant life choices, or other quality of life issues. Referrals may come from parents, family members, case managers, providers, health care professionals, or other agencies.
GAPS delivers these services with a personal approach, taking into consideration the person’s desires, skills, and needs. It also provides community supports through its staff, boards, advisory committee, and volunteer advocates.
Guardianship
In Oregon, parents are recognized as the natural guardians of their children, disabled and non-disabled, until the children reach the age of 18. At that time, parental natural guardianship ceases by law, whether or not the children have a disability. Any person attaining the age of 18 is recognized as a competent adult by law, and remains so unless found incapacitated by a court of law.
Without the court’s determination that an individual is incapacitated, the individual retains all his constitutional rights and is responsible for making his own decisions. These rights include the rights to decide residence, consent to or reject medical care, sign a contract, marry, and make lifestyle choices.
For more information, go to Guardianship.
Health Care Representation
The Arc of Oregon may serve as Appointed Health Care Representative (HCR). A GAPS Regional Board and/or the GAPS Committee must first approve these appointments. GAPS may serve as an HCR for a specific procedure, for a limited time or for a long-term commitment, depending on the Individual Support Plan Team (ISP) and State of Oregon Mental Health annual re-appointment.
The Arc of Oregon may also serve as a Self-appointed Health Care Representative This appointment is only for those individuals already served by GAPS in an advocacy role. Health care decisions previously decided upon by the individual will be honored.
See definitions below for more information.
Advocacy
Unlike guardianship, GAPS’ role as advocate is not legally binding. It is an agreement between an individual and/or their legal representative and GAPS. The assistance may be temporary or long-term. It may include periodic visits, representation at ISP meetings, attending medical consultations, monitoring services, or reviewing and recommending other supports.
GAPS Advocacy services include:
- Family Assistance: GAPS may assist families when distance, illness, or other crises prevent them from representing their family member with developmental disabilities.
- Long Term Advocacy Assistance: GAPS can serve as an advocate on a long-term basis for individuals who can no longer rely on parents or family members to assist them. These individuals do not require guardianship protection, but they do need the advice and assistance of a knowledgeable, trusted friend who can advocate for them in an objective, insightful manner.
- Temporary Advocacy/Ombudsman Assistance: GAPS can serve as a temporary advocate, or ombudsman, to help resolve particular issues, or to ensure the rights, safety and well being of an individual in a crisis situation.
Eligibility
GAPS services are open to persons with mental retardation and other related disabilities who reside in the state of Oregon. With the exception of Parental Assistance Services, the person referred must not have any family or friend willing and able to provide needed services.
Priority is given to:
- Individuals whose parents/guardians have made a testamentary nomination of GAPS to provide advocacy, guardianship, or other services.
- Individuals whose circumstances demonstrate that they are at risk and in need of short or long term GAPS intervention services.
The Referral Process
There are several steps to the application process, depending on the type of referral.
For those seeking GAPS services in the future for a family member, there are two applications:
- Family Request Application which contains questions pertaining to family history, medical and financial information and other related issues
- Supplemental Personal Information application which helps GAPS staff and volunteers get to know the prospective GAPS member as a unique individual with his or her own preferences, traditions, concerns and histories
In addition, a Request for Service form should be completed.
GAPS staff will contact you after reviewing the applications. All information is maintained confidentially by the GAPS office. Your will should indicate your decision for The Arc of Oregon GAPS Program to be named future guardian of your family member.
For immediate, non-family referrals (generated by case managers and providers), there are Guardianship, Advocacy, and Health Care Representative applications. All referrals are reviewed by staff and a Regional Board, as well as by the GAPS Advisory Committee. Staff capacity, finances, and level of need are considered. Most decisions are made within two months. If this is an emergency referral, this process can be expedited.
For any forms and applications, call the GAPS Program at 503-241-2755.
Program Structure
Once an individual is accepted into the GAPS program, a GAPS Local Coordinator is appointed to represent him or her. Local GAPS Coordinators are either employed directly by The Arc of Oregon, or they may be staff members from local county Arcs. It is the responsibility of the Local Coordinator to maintain regular contact with GAPS members and their providers. This includes home visits, attending meetings, consulting with medical professionals, communicating with conservators or trustees, and monitoring all facets of the person’s life.
The Local Coordinators are required to develop and implement semi-annual guardianship or advocacy plans for the people they serve. These plans address personal, residential, vocational (or day activities) and medical issues, and as necessary, behavioral, financial, and legal matters. Local Coordinators also write annual court reports and submit them to the court as required.
The GAPS Director administers the program and provides back-up support for all Local Coordinators. This ensures that GAPS staff is available 24 hours/day for emergency situations.
Along with the paid staff, GAPS also relies on the expertise of trained volunteers. Some of the volunteers serve on a GAPS Regional Board, which meets monthly.
There are currently two regional boards:
- the Metro Board serves Clackamas, Columbia, Multnomah and Washington Counties
- the Greater Oregon Board serves the rest of the state
Board members include medical professionals, social workers and other specialists, as well as parents and siblings of Oregonians with developmental disabilities. Local Coordinators present their semi-annual plans to the respective regional boards for approval and recommendations. This board also approves major decisions.
GAPS believes the protected person should be allowed to participate in the decision making process as much as possible. When the protected person is unable to make informed decisions, the board and staff consider what is in the person’s best interest. In upholding the family approach, GAPS Board members often ask themselves, “What would I do if this were my son or daughter?”
Some GAPS members are also matched with volunteer advocates. These trained volunteers establish personal friendships and may assist in writing plans or discussing important issues with the regional board. These volunteers do not have the authority to make decisions and are supervised by GAPS staff.
Funding/Fees
The Arc of Oregon is a non-profit agency that conducts fund raising activities to support its programs. Financial support is generated through grants, including the United Way of the Columbia Willamette and the Glossup Evans Fund through the Oregon Community Foundation, as well as private donations.
GAPS also has a contract with the State of Oregon Seniors and Persons with Disabilities Division to serve a limited number of Oregonians who fit the following criteria:
- They have significant medical needs and are not eligible for an Appointed Health Care Representative due to their residential situation or conflict on the ISP team.
- They require guardianship to protect them from victimization.
The state Regional Coordinators and a committee from the Seniors and Persons with Disabilities Division must approve funding from this contract.
To stabilize future funding and allow for program expansion, The Arc of Oregon has set the following fees for services:
- Guardianship Fees: $50/hour
- Advocacy Assistance: $35/hour
- Appointed Health Care Representation: $150/6 months
Special Needs Trusts can be billed for GAPS services. Family members are encouraged to discuss this with their attorney in setting up trusts and finalizing their estate planning.
GAPS acknowledges that many individuals have limited financial resources and cannot afford to pay for GAPS services. The Arc of Oregon may elect to serve individuals on a pro bono basis if there are no funds to pay for needed services.
Note: Names have been changed to protect confidentiality.
Todd’s mother knew he would always need guidance and encouragement, but wasn’t sure if he actually needed guardianship. When Todd’s mother died, GAPS stepped in at her request and evaluated Todd’s personal goals and needs. The Board elected not to pursue guardianship, but to make sure he had supports from a semi-independent living program, and to serve him in an advocacy capacity.
Although GAPS accompanied Todd on doctor visits, he was able to make informed decisions and consented to his own treatment needs. He asked GAPS to be his Health Care Representative if he became incapacitated, and completed his own Advanced Directives, with the aide of GAPS staff and his physician. As Todd approached 60, he became more forgetful, prompting GAPS to request a neuro-psychological evaluation. It appears he may be experiencing an on-set of dementia, and for his safety, GAPS has worked with his case manager to move him to a more supervised setting.
GAPS uses funds from his trust to hire a recreational companion—someone to make sure he goes to his favorite restaurant every month and take him to visit his sister who lives in a nursing home. At some point, GAPS may need to file for guardianship, but it will continue to honor the health care decisions Todd made when he was younger.
James moved into a group home several years before his father died. His mother remained involved, but was limited in her own mobility and asked GAPS to step in as an advocate. GAPS became James’s guardian after his mother’s death. Even though James had caring group home staff and a job where he had worked for years, he needed someone outside the county system to advocate independently for his best interests. James needed someone to approve new behavioral strategies and medications, maintain consistent contact with his physician and remember him as his parents did: a loving, sensitive man who, although he can’t express his needs verbally, has a history of close relationships and important memories which need to be kept alive.
Amy grew up in a foster home, provided for by a loving and devoted woman whom she considered her mother. When Amy was 22, she required surgery and follow-up care that was more than her foster mother could provide. Her move to a nursing home was meant to be temporary, but when her foster mother died a year later, she lost the only family member she ever had. She slowly regained her health, but because she required considerable assistance with all her daily living skills and didn’t have outside intervention, it appeared likely she would remain in the nursing home for years to come.
Due to Amy’s developmental disability, she was not able to give informed consent, which presented liability and treatment issues for her medical professionals. The county case manager asked GAPS to become Amy’s guardian so she could access needed medical care. In addition to directing her medical care and providing consents, GAPS also sought guardianship to improve Amy’s quality of life and promote personal growth. GAPS recruited a volunteer to visit Amy twice each month. The GAPS Board explored ways to increase her community involvement and supported the GAPS staff in advocating for a move to a group home.
It took several years, but eventually GAPS and the county case manager were able to move Amy to a more appropriate community setting. GAPS intends to remain Amy’s guardian for the rest of her life because she will continue to need consent and monitoring of medical treatments and an objective, caring advocate assuring her the best quality of life possible.
Volunteer Opportunities
GAPS has two regional boards and an advisory committee, which provide direction, support and expertise to staff. GAPS seeks a combination of medical, legal and social work professionals for the boards and committee, as well as parents and siblings of individuals with developmental disabilities. The Arc of Oregon Board of Directors approves appointments on the GAPS boards. There are additional member requirements for the GAPS Committee. These members are appointed by the president of The Arc of Oregon Board of Directors.
In addition, GAPS trains and supervises volunteers who serve as individual advocates and friends for those served by the GAPS Program. This individual involvement is critical, since many of the people GAPS serves lack family contact and/or friends. GAPS staff conducts reference and criminal history checks on all volunteer advocates.
For more information concerning volunteer opportunities, contact the GAPS Director 503-241-2755 or your local County GAPS Coordinator.
Definitions
Conservatorship –A formal method of managing and protecting the income and assets of a minor or a person who is incapable. Conservatorship is appointed and supervised by the Probate Court.
Court Visitor – A person appointed by the court for the purpose of interviewing and evaluating a respondent or protected person and the person seeking guardianship.
Developmental Disability (for adults)- A disability attributable to mental retardation, autism, cerebral palsy, epilepsy, or other neurological handicapping condition which requires training of support similar to that required by individuals with mental retardation, and the disability:
- originates before the individual attains the age of 22 years, except that in the case of mental retardation the condition must be manifested before the age of 18
- has continued , or can be expected to continue, indefinitely; and
- constitutes a substantial handicap to the ability of the individual to function in society; or
- results in significant subaverage general intellectual functioning with concurrent deficits in adaptive behavior which are manifested during the developmental period. Individuals of borderline intelligence may be considered to have mental retardation if there is also serious impairment of adaptive behavior. (“Manual of Terminology and Classification in Mental Retardation” by the American Association on Mental Deficiency)
Fiduciary –A guardian or conservator appointed under the Oregon Revised Statutes or any other person appointed by a court to assume duties with respect to a protected person. ( ORS 125.005)
Health Care Representative
A Health Care Representative can make medical decisions and sign consent forms.Health Care Representatives are either appointed or self-appointed, depending on the individual’s decision making capacity. Each has their own requirements and regulations.
Appointed Health Care Representative –OAR 308 041 1500 through OAR 309 041 1610 provides for the appointment of a health care representative for making “health decisions for incapable individuals in situations where there is concurrence by the ISP team regarding the individual’s incapacity, the identity of the health care representative and significant health care decisions.” The protected person must be an adult with a developmental disability who lives in a facility or home licensed as a 24-hour residential service.
Self-appointed Health Care Representative –ORS Chapter 127 states, “A capable adult may designate in writing a competent adult to serve as attorney-in-fact for health care. This document is effective when it is signed, witnessed and accepted as required by the Oregon State Statutes and when the capable person becomes incapable. The Statutes also state a capable adult may execute a health care instruction as defined in ORS 127.531. This form of an advanced directive gives instructions to the Health Care Representative and must be signed and witnessed as required.
Incapacitated–“A condition in which a person’s ability to receive and evaluate information effectively or to communicate decisions is impaired to such an extent that the person presently lacks the capacity to meet the essential requirements for the person’s physical health or safety. ‘Meeting the essential requirements for physical health and safety’ means those actions necessary to provide the health care, food, shelter, clothing, personal hygiene and other care without which serious physical injury or illness is likely to occur. “ ( ORS 125.005)
Informed Consent –A person’s agreement to allow something to happen, based on full disclosure of the facts needed to make the decision intelligently.
Individual Support Plan (ISP) –The written details of the supports, activities, and resources required for the individual to achieve personal goals. The general welfare and personal preferences of the individual are the key consideration. The individual and his or her team are responsible for developing the individual plan of support.
Individual Support Plan (ISP) Team –The individual, the case manager, the individual’s legal guardian, representatives of all current service providers, advocate or others determined appropriate by the individual receiving services. The team assesses personal choices and preferences, significant health care, mental health or behavioral needs and safety and financial skills. If the individual is unable or does not express a preference, other appropriate team membership shall be determined by the ISP team members. ( OAR 309-41-405)
Protected Person
–Effective January 1, 1996, “a person for whom a protective order (such as a guardianship or conservatorship) has been entered." ( ORS 125.005) Prior to January 1, 1996, “a minor or other person for whom a conservator had been appointed or other protective order made.” |
Testamentary Nomination –The nomination of a guardian in a Last Will and Testament.
Links
Oregon Administrative Rules
http://arcweb.sos.state.or.us/banners/rules.htm
Oregon Revised Statutes
http://www.leg.state.or.us/ors/
Center for Ethics in Health Care
http://www.ohsu.edu/ethics/
National Guardianship Association
http://www.guardianship.org
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