Special needs adults remain a prime concern for their aging parents. Patricia E. Bauer in the Atlanta Journal-Constitution says:
“A growing generation of parents is now facing old age and the prospect that their children with disabilities will outlive them. As of 2006, more than 716,00 adults with developmental disabilities were living with caregivers over the age of 60 in the United States.”
You may need to take the initiative to talk to your parents about a plan for your sibling’s future. Your parents have cared for them and have tried to provide for the best quality of life that they could. As your parents are advancing in age, you can give them reassurance by getting involved in planning for your sibling with special needs.
No doubt, the prospects lie heavy on everyone’s heart. My youngest brother has autism and has always lived with my parents.
The new President has made this concern part of his agenda. On the White House website it sets as a goal for Special Needs Adults or people with disabilities:
"And fourth, support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution, creating a voluntary, budget-neutral national insurance program to help adults who have or develop functional disabilities to remain independent and in their communities, and streamline the Social Security approval process."
While we support the new administration whole-heartedly in pursuing this, the reality of the slowness of government initiatives combined with the competing forces in this economy make the burden of care for special needs adults squarely on the shoulders of families and the local support that they garner.
In planning for the future, said Gruszkos, it’s especially important for families with autism to work with a professional who specializes in special needs life-care planning.
Such a professional would know, for example, that having more than $2,000 in assets in a child’s name would disqualify him from government benefits, she said.
Also important, said Gruszkos, is to put into writing care instructions for the autistic child, including emergency contacts, medical history and arrangements for living, education and work. MassMutual calls this a “letter of intent.” (Also referred to as a Memorandum of Intent.)
You will definitely want to see that the formal legal documents are in place, you can begin informal conversations now to make sure you understand the big picture as well as the subtleties of your siblings future care.
There will be a lot to cover. Imagine if someone had to describe the intricacies of your life and habits and preferences so your days could proceed as normal. These can be put in written form, but it would also good to hear them and have a conversation, so that you understand exactly what is needed and have an opportunity to ask questions for clarification.
How about taking a tape recorder or digital recorder (or video camera). Using the questions below, have a conversation with your parents about each aspect of your siblings life. That way, in addition to a written record, you have a record that can capture more of the nuances of the way things need to be done. Don‘t plan to do this all in one sitting. Break the conversations up, but try to keep a rough schedule of when you will talk, so that you make sure your records are complete fairly soon.
Now you can turn your attention to the long list of
questions about your special needs adult sibling. Spread the conversations over time so you will understand everything for their health and well being.
These conversations could help you and your parents put together a
creative solution for housing an autistic adult. A family in Chicago created a unique plan into action that would meet their son's needs very well.
Make arrangements to visit the school or workplace, or go along on doctor visits as soon as possible. It's important for the professionals to get familiar you, and for you to learn the routines and locations.
It's also essential that you experience other public outings with your special needs sibling. As in the case with adults with autism, their
social skills are limited and need to be thoroughly understood by you and future caregivers.
An autistic adult in a police emergency could be at risk for great harm. You'll need to learn the
adult autism symptoms to share with police so an encounter with your brother or sister will not be escalated.
Autism awareness is essential for Fire Fighters. If there is a fire, the typical behaviors of autistic adults could be a matter of life and death if fire personnel are not aware.
Questions to Record About Your Special Needs Sibling
What are the questions you need to ask to plan for the future of your special needs adult?
The Challenge of Autism Social Skills for Adult Siblings, Autistic Adults, and Future Caregivers
Understanding the social skills of your adult with autism for you and future caregivers
Adult Autism Symptoms in Police Emergencies
Adult autism symptoms that need to be shared with police in an autism emergency.
Autism Awareness for Fire and Medical Emergency Rescue: What You and Aging Parents Should Teach
Autism awareness for fire and medical emergency teams needs to be a concern for you and aging parents. For the general public, autism has no obvious physical signs. So the behaviors emergency workers might encounter would be surprising if they are not prepared.
Creating Housing Solutions for Autistic Adults After Life with Aging Parents
Autistic adults face uncertainty in housing after a lifetime with aging parents. If your family is among them, you are not alone.
Book for Special Needs Families: Planning for the Future
Recommended book on planning for the future within special needs families
Websites to Support Your Caring with Special Needs Siblings
Self-growth.com is a collective of experts who have combined articles, websites and other resources to help you continue your own personal growth. You will find important information for self-care while caring for aging parents or special needs siblings.
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