Advocacy 101

Thank you to everyone that came out to the IDD Summit on Sept. 4th.  We all have a role to play in ensuring our adults with disabilities are supported in our community.

When the Texas Legislature implemented Managed Care many years ago, the most vulnerable in our community (medically dependent children and adults with physical disabilities) have their long term services (ie attendant care, nursing, etc.) provided through the Insurance companies. The wage rate for attendant care is currently $10.60/hour (or $22,000 per year working full time).  Many of these caregivers are Black/Brown women and the average age is 54 years old.  They do not receive benefits or have retirement plans available  like the State employees that work at the State Supported Living Centers (SSLCs).

Group homes are also having a difficult time finding workers.  Some are shuttering their doors.  Some cannot take on any more clients or only take the easiest of individuals with disabilities.

Many individuals with disabilities graduating from high school (and adults with disabilities in our community) are on 16-18+ year waiting lists for other Medicaid waiver programs.  If they are Medicaid eligible, they are eligible for Community First Choice attendant care which is the same low pay rate of $10.60/hour.  Families often give up jobs because it is difficult to find attendants to care for their adult children (especially if those individuals have complex toileting needs or behavior issues).  If the family cannot find help, but must continue to work, are individuals being left home alone? Do they end up interacting with law enforcement and our county jail system for minor offenses such as trespassing?  Our county jails have become the biggest provider of services for individuals with IDD/Autism and other mental health conditions.  This is not a cost efficient use of our tax payer dollars.

The time has come to raise the attendant care wages to $20/hour and/or make these employees eligible for state benefits.

The recent IDD Summit addressed all these issues.  Please meet with, call or email your legislator to let them know how the low wage issue impacts your family!

Download the One Pager from the IDD Summit

There are many children with other needs, like poverty, hunger or homelessness.  While we sometimes help families find those basic needs, Family to Family Network’s primary mission is to help families navigate the world of disability:

• For education – Individuals with Disabilities Education Act (IDEA)
• For long term services – Formally provided by Dept. of Aging & Disability Services (DADS), now by the Health & Human Services Commission
• For post secondary – Office of Disability Services at university/college
• For employment – Dept. of Labor Office of Disability Employment Policy

The only place you will see us use the term “special needs” is in referring to a type of trust you set up for a child with a disability.

Why are you using the word “special needs” when you refer to your child?
What does that imply? How does it make people feel when you use it?
If it is pity – we don’t want that for your children or any other person with disability. Let’s change how we speak about people.

Read More here:

“When Special Isn’t So Special” 
by Leslie P., Texas Project FIRST

Haben Girma speaks at the White House – “The euphemism Special Needs, after many years of service, has filed for retirement. Nondisabled people receive countless supports, so why should supports for disabled people get treated as something extra?“