7 Key Things When Making A Plan For A Child With Disabilities

Step 1 – Estate Planning For A Child With Disabilities

If you become incapacitated or pass away, how will you provide for your child with disabilities? Without a clear vision, planning can be difficult. If contemplating your own demise is too challenging, there are two approaches to alleviate this. Firstly, identify what you do not desire, such as your children deciding your end-of-life care. Secondly, consider what you would not want to do for someone else, like determining the guardianship of a friend’s children. Failing to plan for your own future places the responsibility of making these decisions on others for both you and your child. Take some time to reflect on these matters, speak with friends and family, and take a break if it becomes overwhelming. As the parent of a child with disabilities, your planning will guarantee that your child will receive the best possible care when you are unable to provide it.

Step 2 – Consultation with an Attorney Specializing in Special Needs

Consulting with a specialized attorney is crucial in ensuring that your assets, financial affairs, healthcare directives, and childcare arrangements are appropriately managed after your death or incapacity. An experienced attorney specializing in special needs can skillfully draft necessary legal documents and establish financial strategies, such as trusts, to guarantee that your disabled child continues to enjoy a high-quality life after you are gone. It is essential that this attorney possesses comprehensive knowledge of Medicare, Medicaid, Social Security, and Supplemental Security Income (SSI) regulations so they can adeptly navigate the complexities that disabilities can present in estate planning procedures.

Step 3 – Planning For Your Own Disability Or Incapacity

Establish a plan for the administration of your finances and healthcare in the event that you become incapacitated and unable to manage them personally. 

Consider these options:
Informal financial arrangements

Informal financial arrangements can involve seeking assistance from a trusted friend, family member, or hiring someone on a part-time or temporary basis to help manage your finances and assets. Utilizing automated banking services, direct deposit systems, or adding another individual to your bank accounts as a signer can enable them to handle tasks such as signing checks, paying bills, and transferring funds between accounts. Although you cannot officially designate someone as a representative payee for your child’s Social Security benefits in case of your absence, your preferred choice can be documented in a letter of intent (refer to Step Eight). It is crucial to contemplate potential representative payees and discuss with them their willingness to assume that responsibility if required, ensuring the continued management of your child’s benefits.

A Power of Attorney legal document

A power of attorney is a legal document that authorizes an individual of your choice to take care of your financial matters and handle transactions on your behalf. It is important to acquire a durable power of attorney so that it remains valid and effective even if you are no longer able to manage your affairs. When choosing an agent or attorney-in-fact, ensure that you can trust them with this immense responsibility, as they will have access to significant control over your finances. For minors or those with disabilities who can still understand their own affairs, it is recommended to create a power of attorney when they turn 18, in order for an agent to help make decisions whenever necessary.

Arrange Health Care

Healthcare and living necessities can be managed through numerous informal and innovative means, often with the assistance of friends, family members, neighbors, and the wider community. These support networks can contribute greatly to fulfilling your essential needs. Nonetheless, it is crucial to explore more structured and established options to guarantee that your fundamental healthcare and living requirements are sufficiently addressed. By researching and considering such alternatives, you can ensure a higher level of security and stability in meeting your essential needs, while still benefiting from the compassionate and diverse support systems available within your community.

Health Care Directives

An Advance Health Care Directive is a comprehensive legal document that allows you to designate a trusted individual to make decisions about your medical treatment on your behalf in the event that you are unable to do so. Creating a directive provides a valuable means for you to convey your specific wishes and preferences regarding your medical care, alleviating potential uncertainty and distress for your family members and loved ones. Many states offer standardized forms for designating a health care power of attorney, enabling you to appoint a chosen individual to oversee your medical care and decision-making process. By establishing a clear and well-defined Advance Health Care Directive, you not only ensure that your desires regarding your medical treatment are respected but also provide peace of mind to those who care about you during difficult times.

Emergency Medical Treatment Directive – DNR/DNI/DNH

A directive for restricting the extent of emergency medical treatment, such as “do not resuscitate/do not intubate/do not hospitalize,” can be established based on your preferences and communicated to your healthcare provider. However, due to the narrow extent of these guidelines, it is essential to complement them with a comprehensive healthcare directive. This additional documentation enables informed decision-making regarding various medical procedures and treatments, ensuring that your individual wishes are respected and upheld during critical situations. A detailed directive enriches the understanding of your intent and can help alleviate potential uncertainties or conflicts that may arise among healthcare professionals and family members during times of crisis.

Step 4 – Assess Your Child’s Guardianship or Conservatorship Arrangements

A guardianship or conservatorship is a legal process in which a designated person is authorized to make financial or healthcare decisions for an incapacitated individual. If your child has a guardianship or conservatorship, it is essential to identify a successor who can take over if you are no longer able to fulfill this role. Your state may have a procedure to allow you to designate a preferred replacement if necessary. If you have not established a guardianship or conservatorship for your child but believe it may be required after your passing, you should seek counsel from an attorney and receive guidance on the necessary steps to ensure your child’s protection. Your planning should involve identifying potential guardians or conservators and ensuring that they understand the process required to obtain a court appointment for that role.

Step 5 – Determine End-of-Life Arrangements for You or Your Child

Organ and Tissue Donation. Many people are unaware that organ and tissue donation can be valuable, regardless of the donor’s age. You can express your wishes to donate or not in various ways, such as through a health care directive, driver’s license, written statement, or donor registry. Unless you explicitly state that you do not wish to donate organs or tissue after your death, your healthcare agent or family members (in order of preference) can decide to donate your organs. A parent may also give consent to the donation of their minor child’s organs.

Funeral Planning. In several states, you can designate a person in charge of your funeral arrangements in a health care directive, or you can complete an advance funeral directive. This directive provides the individual you name the power to make funeral arrangements, which can be beneficial if you anticipate disagreements among your loved ones regarding your funeral wishes and the disposition of your body after death. You can also prepay funeral expenses for both yourself and your child. If your adult child lacks the capacity to arrange their funeral, you will need to explore your state’s legal provisions for how a parent or guardian can make those arrangements ahead of time.

Step 6 – Estate Planning for You and Your Child’s Special Needs Trust

Consult with an attorney to prepare a will or revocable trust that outlines how your property will be distributed upon your passing. This legal document should also specify the portion of your estate that should be allocated to your child. Because Medicaid and the Supplemental Security Income (SSI) program have specific regulations concerning the amount of money a person with disabilities can possess while remaining eligible, your estate plan may require a special needs trust (SNT). A well-crafted SNT can ensure that your child’s quality of life is preserved while also maintaining their eligibility for Medicaid and SSI, as long as the trust is drafted and administered correctly. You can also include any specific desires or preferences for how your child should be cared for after your passing in your will or living trust.

Step 7 – Updating Your Plan

It is essential to bear in mind that devising a plan for the future should be viewed as a continuous progression rather than a singular undertaking. As your life situations and your child’s circumstances evolve, regular reevaluation and modification of your plan become necessary. While there may be instances when you can make adjustments to your documents independently, it is advisable to enlist the expertise of an attorney to ensure your plan remains complete and up-to-date. In order to maintain the utmost effectiveness and comprehensiveness in addressing the changing dynamics, it is highly recommended that you review and revise your plan on an annual basis with heightened semantic richness and thorough attention to detail.

Consulting a legal expert who possesses specialized knowledge in special needs trusts and disability benefits is crucial to guarantee well-rounded provisions for your child with disabilities. By engaging the professional services of such an attorney, you can ensure that all proper steps are taken and that no valuable resources are overlooked. This includes matters such as preserving government benefits, providing appropriate financial support and care, considering tax implications, understanding applicable state and federal laws, and establishing a sound long-term plan catered to your unique situation. A paramount level of semantic enrichment is attained through the comprehensive approach these specialized attorneys bring to the table, resulting in an unparalleled degree of security and preparation for the challenges faced by families of children with disabilities.

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