Aging parents of adults with disabilities

What You’ll Learn About Caring for Your Adult Child as You Grow Older

• The growing challenge for aging caregivers of special needs adults
• Lifelong care needs of adults with developmental disabilities
• Living arrangements of disabled adults as parents age
• Planning for the future: When parents can no longer provide care
• Support for the aging caregiver

The growing challenge for aging caregivers of special needs adults

At Bello Machre, as part of the support system for adults with special needs, every day we see the love and dedication that parents put in. But we also see how much harder it becomes as parents grow older and face their own health challenges. 

For aging parents of adults with disabilities, the emotional, physical, and monetary implications of caring for themselves and their children can be hard to navigate. Support for parents of special needs adults is very much needed, yet rarely talked about. One way you can support yourself (if you’re the parent) is by starting to plan for the future now. It’s the ideal time to start thinking about a contingency plan to help ensure a more stable, less stressful transition should the day ever come when parental caregiving is no longer possible.

What are the lifelong care needs of adults with developmental disabilities?

For most parents, a child turning 18 signals the beginning of independence. For parents of individuals with developmental disabilities, adulthood becomes a second phase of caregiving where parental responsibility remains front and center—even as these parents grapple with similar issues related to their own aging and self-care.

What conditions related to developmental disabilities require adulthood care?

Most conditions related to developmental disabilities require some degree of care that extends through adulthood, though the type and degree of care will depend on each individual’s diagnosis and abilities. This means that parents of adults with disabilities commonly maintain active involvement in all matters related to their loved one’s well-being.
Chronic conditions that start at birth or in childhood, and which impact behavior, cognition, speech, and physical development, require lifelong care. These can include Autism Spectrum Disorders, Down syndrome, cerebral palsy, epilepsy, muscular dystrophy, and conditions related to traumatic brain injuries.

What ongoing care does an adult with developmental disabilities require?

As with conditions that require continuous care, the care provided to adults with disabilities can vary greatly based on circumstance. At a high level, these are the categories of care that commonly fall under parental responsibility for disabled adults:  

• Healthcare management. In addition to ongoing management of physical and mental health issues related to their disability, as they get older individuals also require proactive monitoring and care for age-related health developments, care which must remain accessible and equitable like that offered by a dedicated nursing team.
• Home & daily living. When it comes to day-to-day support, parents typically have their adult son or daughter with a disability continue to live at home, or find an external setting such as a specialized group home where their loved one can live under a degree of supervision that matches their unique needs. 
• Financial/vocational. Depending on whether their child is able to work, and to what degree they can independently earn an income, parents of disabled adults commonly provide financial assistance to some degree, whether for food and rent, healthcare expenses, educational studies, or recreational activities.

What is the impact on aging caregivers?

Parents of adults with disabilities age at the same rate as their loved ones. As time passes, aging caregivers can find the physical and emotional component takes a greater toll, especially as their own bodies and minds face the changes and slowdowns that naturally accompany getting older. There are also increased challenges that parents face related to their own potential health issues and the resulting healthcare costs.  

In some cases, aging itself is enough to make it harder to care for disabled loved ones. If you add sickness or disease to the picture, it could bring an end to a parent’s caregiving abilities even sooner. Now’s the time to begin thinking what a transition of care could look like, and laying the groundwork.

What living arrangements are available for adults with disabilities as their parents age?

Aging and elderly parents caring for disabled adult children can consider a number of alternative living arrangements for their loved one. The specific setting chosen will depend on many factors, including finances, care needs, insurance coverage, geographic constraints, and level of independence. Common options include:

• Supported Living. Personalized assistance to live independently with a focus in community integration, can take place in a number of settings from group homes, to assisted living and skilled nursing facilities.  
• Group Homes. Community-based residential facilities where disabled adults live, learn, and even work together with other residents, where onsite support and support for community events and careers is also provided. 
• Assisted Living. Similar to group home communities, assisted living communities combine independent living with support services, and in some cases may allow co-residence with a family member. 
• In-Home Care. As parents age, they may need additional help caring for an adult child with disabilities, if that child remains at home. A professional, in-home caregiver can be hired to provide varying levels of assistance if offsite housing is not an option. 

Learn more about Bello Machre’s Residential Group Homes for adults with disabilities. 

What happens when parents can no longer provide care for an adult with disabilities?

What happens to special needs adults when their parents die? Or when parents are still alive, but no longer able to care for their disabled adult child? The answer depends on whether advanced preparation has taken place. 

We just highlighted considerations for living arrangements. But if a parent should pass away or face health issues that limit their support capacity, it’s also important to have a solid financial and legal plan to fall back on. This goes a long way toward reducing stress for the parent and loved one at a time when continuity of care and compassion should be the first priority.

What are the financial and legal considerations for special needs adults?

Having to make last-minute financial and legal decisions can be overwhelming for anyone. For sick or elderly parents of special needs adults, it can be that much harder and fraught with emotion.   

Starting to plan now, while you have time and can clearly weigh your options, is a good idea. To prepare for when you may no longer be able to provide care, start by looking into your legal and financial options with the help of an attorney or financial planning professional. 

At a high level, here are some of the things you’ll want to consider.  

• Power of Attorney: this is the person given authority to act on behalf of your disabled adult child in legal and financial matters, be it another family member, a representative from an organization like Bello Machre, or a court-appointed designee. This person can also be designated as legal guardian, but does not have to be. You’ll want to determine who you want appointed as legal guardian. Note: in Maryland, you can choose a version of power of attorney, called Supported Decision Making if your loved one has the ability to make their own decisions and total control is not required.
  
• Financial Stability. Your loved one will need some form of trust or account which gives them access to funds for daily living needs like food, rent, and clothing, as well as extracurricular activities, and ongoing healthcare and job costs. 
  
  These options include a Special Needs Trust, where a trustee is responsible for distribution of the money. And a tax-advantaged ABLE (Achieving a Better Life Experience) savings account, where the disabled individual is the account owner but friends and family can also contribute to it.
  
• Health Care Advance Directive. This specifies medical treatment preferences for your loved one and designates a person to make healthcare decisions on their behalf. Included in this directive can be a living will (specifies specific medical treatments that are wanted or not wanted), a medical power of attorney (designated medical decision maker in the event your loved one becomes incapacitated), and DNR orders.

“In addition, parents of disabled adults can look into a Qualified Disability Expenses account, which covers housing expenses without impacting SSI. It also includes education, health, wellness, transportation, food, and other expenses approved by the Secretary of the Treasury. The great thing is that your loved one has direct access to the account. But while this account has a $500,000 limit, keep in mind there is no Medicaid payback in the state of Maryland. That means once the account exceeds $100,000, SSI is suspended until funds fall back below the $100,000 threshold.”- Elena Sallitto, Principle with Stavely & Sallitto Elder Law, LLC.

For parents of adults with special needs, care continuity is vital

Every parent of a special needs adult wants to provide the best for their child. What that looks like can change as time moves forward and now-aging parents find themselves facing financial, health, and physical challenges of their own. 

To help provide peace of mind and ensure loved ones are looked after in the best possible way, parents of adults with disabilities can start making a plan today. This includes considering where their loved one will live should they, the parent, become ill or pass away. This also includes setting up financial and legal guardrails to ensure their child has continued access to funding and the right level of support.

You’re not alone with Bello Machre at your side

Bello Machre is committed to helping disabled adults and their families find the right support and navigate the changes that come with the passing of time. If you’re interested in learning more about resources and services available to you, please contact Bello Machre.