At The Arc of Virginia we support all individuals to make their own choices and decisions. The legal system or proceeding deprives individuals of their rights to be supported in making their own decisions. Removing a person’s rights make them more vulnerable, not less. There are alternatives to Guardianship that support the individual to make choices and live the life that they choose that meets their needs.
Self-determination is believing you can control your own destiny. Self-determination is a combination of attitudes and abilities that lead people to set goals for themselves, and to take the initiative to reach these goals. It is about being in charge, but is not necessarily the same thing as self-sufficiency or independence.
Principles of Self Determination from The Center of Self Determination:
- Freedom – to decide how one wants to live his/her life
- Authority- over a target amount of dollars
- Support – To organize resources and personnel in a way that is life changing and meaningful.
- Responsibility – acceptance of a valued community role, though activities such as employment, affiliation, spiritual development and doing for others as well as being accountable for public dollars.
- Confirmation – of the important role that individuals must play.
Why look to alternatives to Guardianship?
- This avoids public declaration of incompetency.
- To promote dignity, independence and freedom of choice.
- Encourage individuals to work with the individual not the guardian.
- Guardianship is costly.
- Court system can be difficult to navigate.
- Once guardianship is taken it is difficult to change.
- There are other effective ways to put things in place that will do what you need to be done.
Alternatives to Guardianship
- Person Centered Planning – Person Centered Planning is an ongoing problem-solving process used to help people with disabilities plan for their future. (PACER CENTER)
- Advisors and advocates being active in an individuals life.
- Advance Directives, which include:
- Health Care Power of Attorney – allows you to designate a specific person to make health care decisions for you.
- Living Will – allows you to designate how you want to be treated as far as life sustaining treatments. For example: CPR performed, breathing machines.
- Durable Power of Attorney – allows for an individual (agent) to be given legal authority over another.
- Specific – to handle one type of business or transaction.
- General – handles all financial transactions.
- Durable- states specifically it will last though a person’s incapacity.
- Representative Payee – a person or organization that is designated through the Social Security Administration to handle an individuals Social Security check. (special paperwork and procedures.)
- Personal Money Managers – an individual or organization that can handle fiscal services for example: paying bills.
- Limited Bank Accounts – joint accounts, account limits, co-signing with the individual are tools that can be used to assist individuals with money management.
It is important for individuals and families to ensure that any private funds do not jeopardize the person’s eligibility for public benefits such as Medicaid and Supplemental Security Income (SSI). A special needs trust can be a supplement to the person’s public benefits. A special needs trust is a legal vehicle that manages funds for the benefit of a person who needs some assistance in daily living.
By using a special needs trust, families can provide on-going support to an individual with a developmental disability even after the parents or caregivers have passed away. Medicaid and SSI also have limits on how much a person may earn and in how much he or she may have in assets. If a person goes over those income or asset limits, he or she may lose those benefits and vital services may stop.
A trustee manages assets placed in the trust in accordance with the trust document.
- Types of Trusts:
- Support Trusts- provides for support, care and maintenance of the beneficiary. DOES NOT preserve eligibility for Government benefits: Medicaid, SSI
- Third Party Trusts – Established and funded with assets of a third party can be a family member, provides for amenities only. For example: recreational activities, home furnishings, haircuts… does preserve government benefits as long as it is properly written.
- Pay Back Trusts – established by a family member or individual with trust powers. Funded by the beneficiary’s own funds for example a lawsuit. This trust provides for amenities or extra items, preserves government benefits. Requires language in the trust that upon the death of the individual, the State is paid back first for any government benefits paid during his/her lifetime before distributing to anyone else. This trust can be used for many things including: medical treatment beyond Medicaid, dental, recreational, home or rent.
- Pooled Accounts Trust – can be used to preserve government benefits, established and administered by a non-profit organization. Remaining assets at death left with charity or pay back to state before distributing to others.
ABLE Accounts are tax-advantaged savings accounts for individuals with disabilities and their families. The beneficiary of the account is the account owner, and income earned by the accounts is not taxed. Contributions to the account made by any person (the account beneficiary, family and friends) are made using post-taxed dollars.
ABLE accounts allow eligible Individuals the opportunity to save and fund a variety of Qualified Disability Expenses without endangering eligibility for certain benefits that are critical to their health and well-being, such as Medicaid and Supplemental Security Income (SSI).
ABLEnow is the Virginia-sponsored ABLE savings program, there are special tax advantages for Virginia taxpayers. Earnings grow free from both federal and state taxes. Virginia also offers an annual state income tax deduction of up to $2,000 per contributor for contributions to an ABLEnow account.
Generally, funds in an ABLEnow account are disregarded when determining eligibility for certain federal benefits. ABLEnow accounts are disregarded when determining eligibility to receive disability benefits provided by the Commonwealth of Virginia too.
With an ABLE account, account owners have the ability to control their funds and, if circumstances change, still have other options available to them.
Determining which option is the most appropriate will depend upon individual circumstances.
An ABLE Account provides more choice and control for the beneficiary and family compared to a trust.
The cost of establishing an ABLE account is usually significantly less than establishing a trust.
Individuals/families may have ABLE accounts and trusts.