Legal Issues for Mitochondrial Families Across the Lifespan
Early Intervention (ages 0-3)
Under Part C of the IDEA, all states must implement a statewide system of services for infants and toddlers, birth to age three, with developmental delays or disabilities, and their families. See generally 20 U.S.C. §1431 etseq. To determine if such services are necessary, there must be a timely evaluation of the functioning of each infant or toddler with a disability. 20 U.S.C. § 1435(a)(3). Following the evaluation, the state must develop an individualized family service plan, commonly referred to as an Individualized Family Service Plan (IFSP), to describe the services that are needed by the child and family and how they will be implemented. 20 U.S.C. § 1435(a)(4). Early intervention services are funded, in part, with state and federal funds.
As an example, in New Jersey, a child is considered eligible for early intervention services if he or she is under the age of three and has at least a 33% delay in one or a 25% delay in two or more of the developmental areas:
- Physical, including gross motor, fine motor, and sensory (vision and hearing)
- Social or emotional
Services include but are not limited to: Assistive Technology, Audiology Services; Health Services (clean intermittent catheterization, tracheotomy care, tube feeding, the changing of dressings or colostomy collection bags, and consultation with service providers concerning special health care needs); Medical Services (diagnostic or evaluation services by a licensed physician to determine a child’s developmental status and the need for early intervention services); Nursing Services and Nutrition. Other services may include: occupational therapy, physical therapy, speech/language pathology; vision services (evaluation and assessment of vision, referral for medical or other professional services necessary for the habilitation or rehabilitation of visual functions); psychological services; and social work services.
Educational Entitlements (ages 3-21)
Children between the ages of 3 and 21 with disabilities severe enough to negatively affect learning are entitled to special education services at no cost to parents. These services are federally mandated in all states. In most States, it is the responsibility of local school districts, with oversight provided by the State’s Department of Education or its equivalent governmental office.
School districts are responsible for identifying, evaluating, and then classifying children with disabilities as eligible for special education and related services. State regulations set out time lines and the methods to accomplish this, as well as administrative procedures to resolve any disputes.
Federal law requires that each child must receive a program that meets his or her unique and individual needs. School districts must annually develop a written Individualized Education Program (IEP) that outlines the services to be provided with measurable goals. For some children, the IEP might involve classroom modification, or individual instruction or therapy. Other children might require placement in a specialized class or placement in a private school which specializes in serving children with a particular type of disability. Private schools can provide services on a day or a residential basis. Depending on need, children might be entitled to additional educational services over the summer months.
Children may be eligible for ‘related services’ as part of their IEP. Related services may include speech therapy, occupational therapy, physical therapy, and school-based nursing services.
Schools must document a child’s special education needs as well as his or her progress in school. Evaluations and other records can be helpful later in life to determine eligibility for adult services and other government assistance programs.
Benefits from the Social Security Administration
Supplemental Security Income (SSI) is available to people whose disabilities prevent gainful employment. In order to be eligible, an individual must not have greater than $2,000 in countable resources and less than approximately $800 in monthly income. Because the income and resources of parents are counted until the child turns 18, many people with disabilities will not qualify for SSI until they have reached the age of 18. After age 18, the income and resources of family members are not counted even if the individual continues to live at home. The SSI benefits usually ranges between $450 and $650 per month. The monthly among depends on a number of factors, including where the person lives and what other income he or she may have.
Individuals who qualify for SSI automatically receive Medicaid. Medicaid pays for a wide array of services for people with disabilities and provides government-funded health insurance for children and adults with disabilities who have limited financial resources. Medicaid also provides government funding for long-term services and supports, including institutional care in nursing facilities and, in some cases, in non-specialized placements for people with disabilities.
Social Security Disability Insurance (SSDI) pays benefits to covered workers who are unable to work because of a disability. After two years, the worker qualifies for Medicare. SSDI is typically given to workers who sustain injuries; however, sometimes, people with lifelong disabilities or mental illness qualify because of work history and experience a subsequent problem with continued employment.
Social Security benefits are available to disabled dependents of a parent who collects Social Security benefits or who dies. Individuals who receive Social Security also receive Medicare. Social Security benefits count as income for SSI purposes and, in some cases, can reduce or eliminate SSI benefits.
Health Care Insurance
There are several types of insurance coverage for health care services:
- Private insurance (including group health plans);
- Public assistance (Medicaid and Medicare); and
- State-funded health benefits plans.
Because the coverage and appeal rights differ based on the type of plan and by State, it is important to read your member handbook and governing State law to determine what type of coverage you have and your respective appeal rights.
Private Insurance is provided by your employer or obtained on your own. Generally speaking, private plans are governed by State law and are enforced, depending on the issue, by each State’s Department of Insurance. Services and procedures covered under private plans vary widely. Some private plans may require referrals for special services, or may require you to use certain providers to receive coverage. Additional costs or co-payments may be required if you elect to use providers outside your plan’s network.
Public Assistance Programs include Medicaid (Individual State Plans, EPSDT Program, Managed Care, or Waiver Programs) and Medicare coverage.
Medicaid is a federal-state entitlement program for low-income Americans. There are three basic groups of low-income people parents and children; elderly; and the disabled. To be eligible for Medicaid, one must have limited financial resources (that is, approximately $800 or less in monthly income and no more than $2,000 in countable assets).
Each State’s Medicaid State Plan provides the following Mandatory Services: in- & out-patient hospital treatment; lab test & x-rays; EPSDT services; home healthcare; physician services; nurse midwife; family assistance; and nursing home for those over the age of 21.
In addition, each State may elect to include any of the following 0ptional services:
- Residential treatment centers
- Optical appliances
- Prosthetics & orthotics
- Drugs during long-term care
- Durable medical equipment
- Hearing aides
- Private duty nursing services
- Personal care services
- Clinic services
- Therapies (ST, OT & PT)
- Intermediate care (ICF/MR)
- In-patient psychiatric care for under 21 & older than 65
Among the mandatory Medicaid services contained in the State Medicaid plan is the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) Program. EPSDT services must be made available to every Medicaid-eligible child under the age of 21. Under EPSDT, the state must provide four types of screening services: medical, vision, dental, and hearing, and is required to provide coverage for medically necessary treatment.
EPSDT covers a wide range of treatment services, including all Medicaid mandatory and optional services when they are medically necessary to “correct or ameliorate defects and physical and mental illnesses and conditions” regardless of whether such services are covered under the state plan. Covered services under the EPSDT Program may include: case management, home health care, personal care, private duty nursing, physical therapy and related services, respiratory care, hospice care, rehabilitation, durable medical equipment, hearing aids, eyeglasses, medically necessary orthodontic care, and personal care services.
In order to obtain and maintain coverage, your treating physician must provide written documentation that the requested service is medically necessary. The agency or individual that provides services should always keep precise notes on your condition and continued need for the particular service. Without this documentation, medically necessary services are frequently reduced or terminated.
Medicaid-Funded Home and Community-Based Waiver Programs – many States offer Medicaid-funded Waiver Programs that provide individuals with disabilities care in the home and community as an alternative to institutional care.
Medicare is a partner program to Social Security, which provides a health and financial safety net to those 65 years and older and to those declared disabled for 24 months. Medicare is divided into two parts. Part A covers hospital and limited nursing care. Part B, which requires an extra premium, covers physician services, as well as a variety of therapies and other items. Medicare also has co-payments and deductibles.
Self-Funded / Self-Insured Plans are insurance plans offered by a private employer, in which the employer (not an insurance company) assumes the risk of insuring its employees. Under such arrangement, the employer hires an insurance company to administer the plan and handle all of the claims. Self-funded plans have greater latitude as to what they do and do not cover under the plan.
*Note: Under most private insurance policies, there is a provision for continued dependent coverage for disabled dependent adults. Check your individual policy language to see what is required in order to extend your private dependent coverage of your disabled child. Typically, proof of disability is required.
A Will establishes who will receive your property at death. It also establishes, where applicable, who will serve as guardian of your children. It establishes who will see that your wishes are carried out. Wills executed in one state are usually good in another. That being said, since the tax laws of each state vary, it is a good idea to have your Will reviewed by an attorney after you move into a new state.
What happens if there is no Will? This is called intestacy. Contrary to what many believe, the government does not get your property if you die without a Will. The laws of the state in which you reside at the time of death determine who will get your property. Generally, this will mean that your next of kin will receive your property. Property will only go to the state if there is no next of kin.
Special Needs Trusts
Most parents want to leave assets to their children when they die; however, if a person with a disability receives assets, the results can be disastrous. The person will lose Medicaid and SSI, and the assets may also be subject to recoupment by Medicaid, or by the State if the person is receiving residential services.
Learning this, some parents are inclined to disinherit the child with a disability, leaving everything to the non-disabled children with verbal instructions to use part of the inheritance for the benefit of the sibling with a disability. This is what is sometimes referred to as a ‘gift of moral obligation,’ and it can be equally disastrous. For example, the non-disabled child may not use the inheritance on their sibling’s behalf, and is under no legal obligation to do so. The spouse of the non-disabled child may want to use the assets for other purposes not related to the sibling with a disability. Even if the non-disabled sibling uses the assets exactly as the parents intended, they can be claimed by creditors, can have negative tax consequences on the non-disabled sibling, and can be subject to equitable distribution in the event of divorce.
Instead, it is recommend that parents establish a special needs trust (SNT). A SNT can protect the assets while, at the same time, making the assets available to protect and enrich the life of the person with a disability without jeopardizing benefits available from the government. A SNT is a unique legal document that contains a set of instructions describing how assets placed into trust will be administered on behalf of a person with a disability. It must be carefully worded and is best written by professionals familiar with disability services and programs.
Parents and other family members can use a SNT to hold assets for a disabled person. Even families with modest assets should establish a trust; typically, such trusts are not funded until one or both parents die. A SNT can be funded through life insurance or estate assets distributed through one’s Will. So long as the assets have never vested in the person with a disability, the SNT need not contain a provision reimbursing Medicaid and other providers.
A trust can be established in a Will or as a separate document that is sometimes called a ‘living trust.’ Usually, it is a mistake to establish the trust in a Will when the chief beneficiary is a person with a disability. When the trust is funded, usually on the death of both parents, the trustee’s responsibilities begin. The trustee is designated by the donor when the trust is signed. The trustee can be a family member, a friend, a bank, a professional, or some combination, like a bank and a relative.
Trust funds can be used to purchase independent professional opinions as necessary, fill in gaps in services, provide additional recreation and other amenities, pay for a private residential placement, or a vehicle used to transport the beneficiary of the trust.
At the death of the beneficiary, any remaining trust property is disposed according to the instructions written in the trust document by the donor. For example, property might go to other family members or to a charity.
Legal Documents to Aid in Decision Making
A Durable Power of Attorney is a document an adult with capacity can create to appoint another, called their attorney-in-fact or agent, to perform duties and make decisions concerning their own financial business when they are not able to do so generally during periods of incapacity.
A Medical Directive, also referred to as an Advance Directive or Living Will, is a similar document to the durable power of attorney, but deals with medical decision making, including end-of-life decision making, when one is incapacitated and unable to do so for themselves. The agent or proxy is to make decisions that the individual would have wanted with regard to their medical care.
In the eyes of the law, even those with a significant developmental disability is legally permitted to make decisions on his or her own behalf at the age of 18. Therefore, if due to a disability, a person is not capable of making his or her own decision, it is necessary to secure the judicial appointment of a guardian.
A guardian is someone appointed by the court to make decisions on behalf of another person who cannot make decisions independently. There are two types of guardians: a guardian of the person usually has the power to make decisions concerning living arrangements, day programs, medical care, and other personal decisions. A guardian of the property usually has the power to make decisions regarding whether and how to sell, trade, or invest property. They do not, however, have power over assets held in trust unless the guardian is also the trustee.
In order to have this authority, a court must first find that the person cannot make decisions about him/herself or his/her property. If a court determines this to be the case, it will appoint someone to take on this responsibility; in most cases, one or both parents. The court may also appoint a brother or sister to serve as guardian with the parents, or alone, after the parents have died. Once they have secured guardianship for an adult child, parents can appoint a successor guardian in their will, or can temporarily delegate guardianship through a written document called a power of attorney.
The guardian’s job is to make sure that the person with a disability or mental illness is to make decisions in the best interest of the person under guardianship and make sure he/she is safe. The guardian does not bear any risk for the person’s acts or debts, and is under no legal obligation to provide direct care to the person. There is no ‘downside’ to serving as a guardian
Valerie A. Powers Smith, Partner, Slovak Baron Empey Murphy & Pinkney LLP with offices in Palm Springs and Indian Wells, CA; Princeton, NJ; and Manhattan, NY. She has over twenty years of experience in the field of special needs and elder law including the following highly specialized practice areas: health care insurance, short-term and long-term disability insurance, Medicaid, Medicare, special needs trusts, trust administration, estate planning & administration, guardianships and conservatorships. Valerie also practices in the area of estates, trusts, and probate.
Over the years, Valerie has concentrated her legal work in the area of health care law and has vigorously advocated for families and people with disabilities to gain medically necessary care from private insurance companies, Medicaid, Medicare, and other health insurance providers. She has additionally focused her practice in the areas of special needs trusts and estate planning and routinely advise families, executors, and corporate trustees on the area of special needs law and the administration of the same.
She has additionally focused her practice in the areas of trusts, special needs trusts, and estate planning and routinely advise families, executors, and corporate trustees on the area of special needs law and the administration of the same. Valerie has additionally focused on complex matters including same-sex and multi-generational planning.
Valerie has written extensively on a variety of disability law topics, has co-authored several publications on accessing adult services, Medicaid, estates and trusts, and health insurance; and is a regular contributor to several newsletters of disability-based advocacy organizations throughout New Jersey, Pennsylvania and California. She has also lectured for disability-related groups and legal organizations throughout Pennsylvania, New Jersey, California, and D.C since 1997.