People with special needs have a wide range of requirements for assistance: they may be fairly independent or almost fully dependent on others. Their needs may be predominantly physical, they may be cognitive, or both. Depending on where you live and the nature of the disability, there may be a wide range of care options available for adults with special needs – or the options may be limited. It is important to match the person’s needs and desires with the best possible living option or combination of options.
Family is the first care option that most people consider. Parents often care for their adult children with special needs until they are no longer able to, and then other family members, such as adult siblings, take over as care providers. Caring for a family member with special needs can be very rewarding, but it can also add a lot of stress for family members – especially if everyone isn’t on the same page. Not all potentially caregiving siblings are willing or able, so it’s important to engage in family discussions and come up with contingency plans. If family members choose to care for their loved one with special needs, they may want to do so in combination with respite care or day program options. However, family may not always be the best option or may not be an option at all. Some adults with special needs are able to be more independent and may wish to live accordingly.
Independent living is for those adults with special needs who are able to complete many tasks on their own with only minimal help. Personal care professionals can come into the home and provide needed assistance for a few hours a day or more. This helps the person with special needs to live on their own. There is also assistive technology available to help people with disabilities maintain their independence. Transportation can be a limitation for those with special needs living independently. Many organizations address that by providing transportation services appointments and jobs to help the person with special needs maintain his or her ability to live independently.
Group Homes or Supervised Community Residences
Group homes can be an excellent option for people with special needs who do not wish to live with family but are unable to live independently. Usually those living in group homes do not need advanced medical care. A group home is staffed with professionals who manage the home and provide assistance for the special needs of the adults living there. A group home usually consists of four to six adults with special needs living together. The benefits of a group home are socialization for the adults with special needs and learning to work together with others. It also allows them to still maintain some independence.
Day programs provide options for families who want to keep their loved one living with them but who need someone else to provide care while they are working or who need respite care. Day programs are offered through independent agencies and also through some long-term facilities. They offer opportunities for the person with special needs to socialize and participate in activities. Children with special needs can continue to go to public school until they are 21, but after finishing school a day program can help to continue the routine and structure in their life.
Long-term Care Facilities
In some cases, people with special needs don’t have family members who are able to care for them, or they may not have the means to pay for other care options. Many of the options listed previously are only available on a private-pay basis and can be quite expensive. Living in a long-term care facility may be a good option for those with advanced medical care needs. Some higher-functioning adults with special needs may also live in long-term care facilities, but there are generally other options that allow for those who are able to live more independently.
Finding and Paying for Care
Unfortunately, while some public assistance may be available to help support the care of some adults with special needs, there are significant gaps in the system. For instance, finding residential facility placement can be challenging, especially for individuals under age 65 or who have behaviors that are dangerous to others or difficult to control. Sometimes accepting public benefits to help pay for care helps financially but limits the care options, and the person with special needs may have to receive care in an environment that isn’t ideal for their needs or wishes. Because of these systemic gaps, it is important to plan as early as possible for the care of adult children with disabilities.
Planning for individuals with special needs should include an assessment of the needs of the person, the financial resources available, and the needs and wishes of other family members (who may be potential care providers or who may wish to leave assets to the person with special needs). After this assessment is conducted, a qualified professional can recommend the best options to meet the person’s and the family’s needs.
If you have any questions about something you have read or would like additional information about special needs planning, please feel free to contact us. We would be happy to help your family develop a comprehensive, multi-generational plan to ensure that the person with special needs receives the best possible care and that other family members’ wishes and needs are accommodated.