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In 2022, the cost of raising a child in the U.S. to age 17 was roughly $17,000 per year. For families of children with disabilities, that estimate runs far higher.
The costs of such necessities as health interventions and behavioral therapies, assistive technology, medications, child care, and sensory-friendly items can mean parents raising a child with autism to adulthood will pay about $60,000 annually, according to nonprofit Autism Speaks. Depending on the severity of the child’s disability, those costs can easily escalate further.
Children with Autism Spectrum Disorder (ASD) who meet certain criteria outlined by the Social Security Administration (SSA) may be able to secure public benefits that can offset these costs to some degree.
Supplemental Security Income (SSI) is one such public benefits program. It is a federal assistance program that provides modest financial support in part to help families caring for children with disabilities. SSI is also a “means-based” program; to be eligible, the recipient’s resources cannot exceed extremely strict and specific limits. Note that the income and assets of the child’s parents can affect SSI eligibility.
The Social Security Administration lists autism as a disability. Children with ASD could meet the SSA’s definition of disability, qualifying for SSI. Autism is a spectrum disorder affecting individuals differently. Eligibility depends on the severity of autism and how it affects a person’s abilities. For children and adults, the SSA lays out the medical criteria for determining whether individuals with autism can receive benefits.
The SSA recognizes youths with autism as disabled when they have medical documentation of deficits in verbal and nonverbal communication and social interaction, as well as significantly restricted, repetitive patterns of behavior, interests, or activities.
They must also have an extreme limitation in one, or marked limitation of two, of the following mental functioning domains:
Understanding, remembering, or applying information.
Interacting with others.
Concentrating, persisting, and maintaining pace.
Adapting or managing themselves.
When children with ASD receive SSI, they get a monthly payment that helps cover certain needs. In addition to using monthly payments to cover basic needs, families who may have limited resources can also use SSI to cover expenses related to autism, such as therapy, educational programs and summer camps, communication devices and sensory tools, and respite care.
Children who meet the SSA’s disability criteria for autism must also have resources that fall under the SSA’s limits. The administration considers the income and resources of a child as well as family members. Even if a child spends time in a residential program, household members’ finances factor into the decision.
To access SSI benefits for a child with ASD, families need records to show that their child’s autism significantly impairs them. These records typically come from health care providers as well as schools.
In 2023, the maximum monthly benefit for SSI is $914 per individual. However, the amount of Supplemental Security Income that a child with autism can receive depends on numerous factors:
The child’s financial status, including the income and resources of parents and guardians; additional sources of income offset monthly Supplemental Security Insurance payments.
The child’s state of residence; states have different rules determining how much assistance they provide. Some states supply additional payments to SSI recipients to offset the cost of living.
In many states, children with ASD who receive SSI benefits are automatically eligible for Medicaid, a joint federal and state health insurance program for people with low incomes and limited resources. Other states have different eligibility rules for Medicaid, and SSI recipients may need to apply separately for Medicaid coverage.
Parents can apply for benefits for their children by taking the following steps.
The first step is completing the Child Disability Report. This includes providing information about the child’s medical conditions, medical records, and education.
After completing the Child Disability Report, you must contact the Social Security Administration to complete the application. The state agency decides whether the child is eligible for SSI.
To make this decision, the agency reviews the information the applicant provides and conducts a disability interview. If needed, the agency can request additional evaluations at its expense.
It can take three to five months to receive a decision. Applicants can appeal if they disagree with the outcome.
If you are considering applying for SSI benefits for a child with autism, consider speaking with a special needs planning attorney. An attorney can guide you through the process, help you present a robust application, and address your unique needs.
Here at Sharek Law Office, we are qualified to help you and yours in special needs planning. Call us at 412-347-1731 or click here to schedule your free 15-minute introductory phone meeting to discuss tools like special needs trusts and ABLE accounts for you and yours.
This article is a service of Sharek Law Office, LLC. We don’t just draft documents; we ensure you make informed and empowered decisions about life and death, for yourself and the people you love. That's why we offer a Life and Legacy Planning Session, during which you will get more financially organized than you’ve ever been before, and make all the best choices for the people you love. You can begin by calling our office today to schedule a Life and Legacy Planning Session and mention this article to find out how to get this $750 session at no charge. Please note this is educational content only and is not intended to act as legal advice.
In health care settings, the body gets medical attention, but the mind and soul matter, too. Older adults in medical care face a battery of health questions, but too often the most consequential one goes unasked and unanswered: What does a good day look like for you today?Medicare requires people to receive a spiritual assessment within their first five days of admission into hospice. Many states allow a nurse to conduct the initial spiritual assessment, but I think it helps both the person and the health care provider for the assessment to be done with someone who has theological training. Many have been certified in clinical pastoral education, or CPE. Nurses can get so focused on the technical to-do lists of medical work the measurements, the tests, the drug regimens that it can be hard to make time for the issues that matter most to the living human, namely, their happiness, peace and contentment. As a spiritual care provider with 17 years in senior care facilities, and as a chaplain in the Army National Guard and Air Force National Guard, I have counseled hundreds of people in the final days of their lives. For older adults and their families, one of the most valuable resources is also little-known a Medicare option that provides spiritual counseling for people in hospice. Longing for ConversationToo often older adults in care are being talked at, not listened to. Many times, I've found that people in the last chapter of life want to discuss their path to the end more than their medical professionals and, especially, more than their loved ones. It often helps to have that discussion with a professional who is trained to hear them, and, if requested, to comfort and advise them. RecommendedOpinion: Why I Went on Hospice Even Though I'm Not Dying | Personal PerspectivesThe code of ethics for the leading chaplain and spiritual care associations all prohibit proselytizing. A spiritual care provider should be able to work with someone on their own terms, no matter their beliefs. The United States may be turning more secular, but the fact remains that older adults are the most faith-affiliated of any demographic age group.This initial spiritual meeting is likely to be about the basics: Is the person religious? What is their support system? Will a certain faith-based ritual bring meaning or comfort? Do they have a preferred faith leader? Or is a secular discussion a better fit for the person's beliefs?
Guardianship is a serious legal process that serves as a last resort for caring for an elderly parent who can no longer make sound decisions for themselves. It requires a court hearing and confirmation of incapacity by medical providers.What is Guardianship?Guardianship means an individual is appointed by the court to make medical decisions and manage daily care for an elderly parent. This typically occurs when an elderly parent:Is diagnosed with cognitive impairments like dementia or Alzheimer's diseaseHas suffered brain injuriesExperiences serious health conditions that impair decision-making abilitiesKey Considerations in GuardianshipEmotional ChallengesDeciding to pursue guardianship often involves mixed emotions. Adult children may feel uncomfortable, especially if family members disagree about the necessity of guardianship.Legal RequirementsTo establish guardianship, documentation must be submitted to the court that:Substantiates the degree of cognitive impairmentProvides evidence of poor decision-makingIncludes a medical assessment, potentially a neuropsychological evaluationTypes of GuardianshipGuardian ResponsibilitiesMake medical decisionsManage daily careAdvocate for the elderly parent's best interestsFollow the principle of substituted judgment (making decisions the parent would make)ConservatorshipIn most situations, a conservator is also appointed to manage money and property. This can be the same person as the guardian or a separate individual.Challenges of GuardianshipAdvocacy and Medical InteractionsGuardians must:Navigate complex healthcare systemsCommunicate with medical professionalsUnderstand and research medical conditionsMake thorough, prudent decisionsFamily DynamicsGuardianship can create:Potential conflicts between family membersDisagreements about care and spendingEmotional stress that may damage relationshipsState-Specific ConsiderationsGuardianship laws and terminology vary by state. Some states have:Different definitions of guardianshipVarying availability of professional guardiansUnique legal frameworks for elder careImportance of PreparationRecommended StepsHave early discussions about care preferencesDocument the elderly parent's wishesUnderstand the full scope of guardianship responsibilitiesSeek support and resources for caregiversAs the population ages and chronic diseases become more prevalent, understanding guardianship becomes increasingly important for families caring for elderly parents.
You think you or your loved one might need some help around the house, but youre not sure what. Youve done a bit of research, but the language can be confusing. Whats the difference between home care and home health care? What services does a companion provide? And most importantly, which services do you need? Each type of service, from companion care to skilled nursing care, caters to different needs and offers varying levels of support. Knowing the differences can help you make an informed decision thats best for your family, says Siarra Thorning of Right at Home Grand Junction. Heres a breakdown of the primary in-home caregiver services available. Companion Care (or Sitter Services) Companion care, sometimes known as sitter services, mainly provides companionship for seniors or individuals who do not require intensive medical care but may need supervision and light assistance. This service is ideal for those who wish to remain in their home and maintain a level of independence. Companion care helps ensure the individual is safe in their home and gets regular social interaction. Caregivers in this role engage in activities such as: Conversation and companionship, including hobbies, games, and walks Meal preparation and dining company Light housekeeping Errand services, such as grocery shopping Transportation to appointments or social events Medication reminders Companion care is suitable for individuals who are mostly independent but may be at risk if left alone for long periods, such as those with early-stage dementia or limited mobility, says Thorning. Personal Care (or Home Care) Personal care professionals provide a more hands-on level of support, helping with the personal care of an individual. This service is often more generally called home care, explains Thorning. These caregivers have more training than companion caregivers and can assist with the physical aspects of daily living. Their tasks typically include: Bathing and personal hygiene Dressing assistance Mobility assistance Incontinence care More detailed medication management Monitoring of vital signs under some circumstances Personal care is ideal for individuals who need regular assistance with personal care tasks but do not require medical intervention. Its a good fit for those with moderate disabilities or more advanced stages of age-related conditions. Home care visits are typically a minimum three-hour shift as often as needed up to 24/7 care and can continue as often as visits are needed. Nursing Care (Home Health Nurses) Nursing care at home is provided by registered nurses (RNs) or licensed practical nurses (LPNs). This type of care is necessary when an individual needs medical care at home, whether theyre recovering after a hospital stay or need help managing a chronic condition such as chronic lung or kidney disease. Home health nurses perform a range of medical tasks, including: Wound care Administering medications, including injections Pain management Medical equipment operation Monitoring health status and adjusting care plans accordingly Nursing care is suited for individuals with significant medical needs that require professional health monitoring. Its commonly used for recovering from surgery, managing serious illnesses, or managing complex health conditions requiring regular medical attention. Home health visits are often intermittent and limited. As Thorning notes, They last until recovery goals are met or the health care provider certifies the visits can continue. How To Decide What Type of In-Home Care Is BestThorning says its common for care needs to cross over these categories. For example, someone who needs a nurses help managing their lung disease at home may also need the housework-type help provided by a home care aide. Here are some additional thoughts to help with the decision: Evaluate the individuals level of independence and medical needs. A person with lung disease may not need help around the house. Consider the care recipients preferences and financial situation. Insurance (including Medicare/Medicaid) typically does not pay for in-home care or may pay only under limited circumstances. Consult with healthcare professionals for tailored advice and guidance. What kind of care does the primary care physician recommend? Patients who are being discharged from a hospital or nursing home may also receive recommendations from the discharge staff. Remember, advises Thorning the goal for receiving care or assistance at home is to maintain the highest quality of life possible. If you are helping a loved one or friend decide on care, respect their wishes and needs as they age or recover in the comfort of their own home. Questions To Ask When Considering In-Home Care Providers As you research in-home care options, ask each provider these questions to ensure the company is reputable and will provide exceptional, quality care: Are Social Security, federal and state taxes, and unemployment insurance paid? Are the caregivers bonded/insured? Are workers compensation and professional liability insurance paid? A trustworthy company will pay the taxes and insurance for its caregivers, so you are protected from legal and financial responsibility. Is the required state licensing up to date? Have all caregivers undergone background checks, including references and criminal records? Are supervisory home visits conducted to verify that quality care is being provided? Asking these questions will help sort out which providers have a good reputation and are highly regarded in the community and which do not have these qualities. Above all else, ensure that dependable, quality care will be provided by people you can trust.About Right at Home of Grand Junction 2777 Crossroads Blvd Ste 3 Grand Junction, CO 81506 Our office of Right at Home is a locally owned and operated franchise office of Right at Home, LLC, serving the communities of Mesa, Garfield, Eagle, and Pitkin Counties. For more information, contact Right at Home by Calling 970-697-1331 | Email: Care@gjhomecare.com | Web Address: www.gjhomecare.com
Our Firm Prepares You for Life What makes our firm different is that we were built with the needs of growing families in mind. We understand you are BUSY, you are growing, you are planning for a life of prosperity and you value ease, convenience and efficiency. You are raising children, and caring for elderly parents, while also working hard to build your own nest egg for a lifetime of support. You want to know youve made the best decisions for your family and that your plan will work when your loved ones need it most. You want to make sure your minor children would be raised by the people you choose, and never by anyone you wouldnt want, and that your teens and adult children are properly prepared to care for you and what you leave behind. You want to feel confident that youve made the right choices, and handled everything so that you arent leaving behind a mess, when something happens. That is our focus as well. Weve developed unique systems to give you the same access to a Personal Family Lawyer as was previously only available to the super-wealthy, so you can have the guidance you need to build and maintain a life of prosperity and wealth. And, to keep your family out of court and out of conflict, which is the greatest risk to the people you love and all you have created, even if youve already worked with a traditional lawyer or created documents online. Our Team Is Here for You We encourage communication with our clients. In fact, weve thrown out the time clocks so you never have to be afraid to call with a quick question. Everything we do is billed on a flat-fee basis, agreed to in advance, so there are never any surprises. We have a whole team to serve you. When you call our office to ask your quick question, you wont have to wait hours or days for a phone call back. Youll get your question answered, right away. And, if you need to schedule a more in-depth legal or strategic call with your Personal Family Lawyer, a call will be scheduled when you're both available and ready for the call so we can make the very best use of your time and not waste your time by leaving voicemail after voicemail back and forth. And, we ensure the most important details of your planning are followed through on and your plan continues to work throughout your lifetime. We have a funding coordinator to ensure your assets are owned the right way throughout your lifetime and none of your assets will end up going through a long, expensive court process or being lost to the state because they were missed after your death. Weve created unique membership programs to keep your plan up to date year in and year out as well as give you access to our Trusted Team of Legal Experts for guidance on ANY legal or financial matter. One day you will need a lawyer. I dont know why and I dont know when, but when you do, you will be grateful you can call on us and well be here to advise you or get you out of a jam. We Help You Transfer Your Life and Legacy Lastly, we believe your financial wealth is only a small part of your overall Life and Legacy Planning which is made up of your far more valuable and most often lost upon incapacity or death intellectual, spiritual and human assets. These assets are what make you who you are, and sum up whats most important to you. And, a survey of inheritors has revealed that what they care about even more than inheriting your money, is inheriting these intangible assets. Most estate plans only focus on the transfer of your financial wealth to the next generation. Most people have such great intentions of passing on the intangible, but very few ever get around to it. Its just not a priority, until its too late. How much do you know about your grandparents values? Their most prized personal possessions? How they felt about you? What they had learned during their lifetime? If you are like most people, you know very little. Thats why we build the capture and passage of these most valuable assets into every estate plan we create. Not only will we help you pass on your money, but also your values, your insights, your stories and your experience the truly valuable assets your loved ones care about the most. Weve developed a tool that allows us to capture and pass on your whole family wealth, including your Intellectual, Spiritual and Human assets. I cant go into all of the details here, but well definitely talk about it when you come in for your Life and Legacy Planning Session.